# Myeloma Patients Europe


## Posts

- [ASH 2025 summary video interviews](https://www.mpeurope.org/ash-2025-myeloma-and-al-amyloidosis-updates/): The largest haematology meeting in the world has just finished. The American Society of Hematology (ASH) Annual Congress took place in Orlando, Florida, US, where the latest research in blood diseases was presented. Myeloma Patients Europe (MPE) interviewed key experts to learn more about the most relevant studies and abstracts in myeloma and AL amyloidosis. Watch these interviews to learn what the most important updates were in myeloma and AL amyloidosis and why these results matter for people living with these conditions. Click on the thumbnails to watch. Dr. Charlotte Pawlyn &#8211; Majestec-3 Dr. Charlotte Pawlyn from The Royal Marsden&hellip;
- [MPE myeloma highlights from ASH 2025](https://www.mpeurope.org/mpe-myeloma-highlights-from-ash-2025/): From 6-9 December Myeloma Patients Europe (MPE) attended the American Society of Hematology (ASH) Annual Meeting in Orlando, Florida. Over 20,000 researchers, doctors, nurses and patient advocates attended the meeting to share and discuss the results of the latest research from across blood cancers. ASH was a great way to close out another successful year at MPE, meeting with our medical, advocacy and industry partners and hearing about groundbreaking research in myeloma and AL amyloidosis. We were also privileged to present data from our own patient research Myeloma patients&#8217; attitudes and perceived burden of treatment administration routes and locations: insights&hellip;
- [MPE Year in Review 2025](https://www.mpeurope.org/mpe-year-in-review-2025/): We are delighted to share MPE&#8217;s  Year in Review 2025, a summary of what we have achieved this year alongside our many collaborators.  This year we have strengthened partnerships, welcomed new members into our community and made progress on the European advocacy issues that matter most to patients and their families.  We have worked together to amplify patient voices in research and policy, expand access to educational resources to help patients make informed decisions and generated evidence to address the needs of myeloma and AL  amyloidosis patients.   Each achievement reflects the dedication, expertise and generosity of our community —patients,&hellip;
- [MPE member AF3M holds 20th National Myeloma Day across France](https://www.mpeurope.org/mpe-member-af3m-holds-20th-national-myeloma-day-across-france/)
- [MPE member in Israel hosts 20th anniversary conference despite significant challenges](https://www.mpeurope.org/mpe-member-in-israel-hosts-20th-anniversary-conference-despite-significant-challenges/)
- [MPE webinar on ASH 2025 myeloma highlights](https://www.mpeurope.org/mpe-webinar-on-ash-2025-myeloma-highlights/): Myeloma Patients Europe (MPE) will host a webinar covering key updates on myeloma presented at the American Society of Hematology (ASH) Annual Congress, which will take place from 6–9 December 2025 in Orlando, Florida, USA. The webinar will be held on Wednesday, 17 December 2025, from 17:00 – 18:00 CET. It will be led by Prof. Dr. Hermann Einsele, Director of the Department of Internal Medicine II, University Hospital Würzburg, Germany. Prof. Dr. Einsele will give a 40-minute presentation followed by a 20-minute Q&amp;A session, where attendees can submit their questions. If you are unable to attend, you can submit your questions in advance to info@mpeurope.org, and we will&hellip;
- [Regional meeting in Sarajevo unites myeloma community](https://www.mpeurope.org/regional-meeting-in-sarajevo-unites-myeloma-community/): On Saturday, 18 October, a regional meeting of patients, doctors, associations, and institutional representatives from Bosnia and Herzegovina, Croatia, and Serbia was held in Sarajevo, under the title &#8220;Together for Life with Myeloma&#8221; – Myeloma Day 2025, organised by Mijelom u BiH, (the Association of Patients with Multiple Myeloma, Myelodysplastic Syndrome, and Other Rare Blood Diseases in Bosnia and Herzegovina). The event gathered experts in the field of haematology, as well as representatives of patients, associations, and institutions from the three countries, with the aim of strengthening regional cooperation and establishing joint initiatives that contribute to better understanding, treatment, and support&hellip;
- [Watch our webinar "How are costs and medicine effectiveness part of decision-making in medicine access?"](https://www.mpeurope.org/watch-our-webinar-how-are-costs-and-medicine-effectiveness-part-of-decision-making-in-medicine-access/): Aimed at patients, carers and patient advocates, as well as to a general audience, the webinar provides basic knowledge on the topic of cost-effectiveness analysis in decision-making (including health technology assessment) on new medicines. This webinar was organised as part of the ASCERTAIN project, which works to improve affordability and accessibility to innovative health technologies across Europe. &#8211; no previous health economics knowledge is needed to attend! The webinar was given by Frederick Thielen, PhD, Assistant Professor, Erasmus School of Health Policy and Management, Erasmus University Rotterdam. Watch this webinar here: https://youtu.be/aXXoDoQD5q8 Views and opinions expressed are however those of the&hellip;
- [Slovenia 'lights up' during Blood Cancer Awareness Month](https://www.mpeurope.org/slovenia-lights-up-during-blood-cancer-awareness-month/): This September, our Slovenian member organisation, Društvo BKB, once again marked Blood Cancer Awareness Month and European Myeloma Day, with a wide range of activities dedicated to raising awareness and supporting patients across Slovenia. They organised 12 information stands in health centres, hospitals, and at the University Medical Centres in Ljubljana and Maribor. A special highlight was 17 September, Patient Safety Day, when they emphasised the importance of safety and quality in healthcare. On 27 August 2025, in cooperation with the Lymphoma &amp; Leukemia Association, our Slovenian colleagues held a press conference dedicated to raising awareness about the symptoms and&hellip;
- [Serbia marks European Myeloma Day with a packed September](https://www.mpeurope.org/serbia-marks-european-myeloma-day-with-a-packed-september/): Throughout September, the Multiple Myeloma Patient Association of Serbia (MMPAS) marked Blood Cancer Awareness Month with a powerful and heartfelt series of activities across the country — especially in smaller towns, where awareness of multiple myeloma remains extremely low. Guided by empathy and driven by purpose, they launched two national campaigns focused on informing, educating, and supporting – not just patients and caregivers, but entire communities affected by myeloma. During September, they visited three cities: Subotica, Užice, and Požarevac, and they’re not done yet. By the end of the year, they will also bring the mission to Niš, Kraljevo, and&hellip;
- [Highlights from the International Myeloma Society (IMS) annual meeting 2025](https://www.mpeurope.org/highlights-from-the-international-myeloma-society-ims-annual-meeting-2025/): &nbsp; On September 17-20, Myeloma Patients Europe (MPE) attended the International Myeloma Society (IMS) Annual Meeting in Toronto, Canada. It is one of the most important conferences for world-renowned myeloma experts and researchers. The IMS Annual Meeting focuses on basic science, preclinical, and clinical aspects. MPE was there to learn about the latest clinical updates in myeloma and share patients’ perspectives with key stakeholders in the field. This year, Myeloma Canada, an MPE associate member, hosted an International Patient and Caregiver Conference prior to the IMS Annual Meeting. It gave the Canadian myeloma community great opportunities to interact with global&hellip;
- [Join our upcoming MPE and ASCERTAIN webinar on cost-effectiveness analysis](https://www.mpeurope.org/upcoming-mpe-and-ascertain-webinar/): How are costs and medicine effectiveness part of decision-making in medicine access? Thursday, 9 October 2025, 17:00 &#8211; 18:30 CET Aimed at patients, carers and patient advocates, as well as to a general audience, the webinar will provide basic knowledge on the topic of cost-effectiveness analysis in decision-making (including health technology assessment) on new medicines. Speaker: Frederick Thielen, PhD, Assistant Professor, Erasmus School of Health Policy &amp; Management, Erasmus University Rotterdam We are thrilled to have Dr. Frederick Thielen joining us for this webinar. Frederick is Assistant Professor at the Erasmus School of Health Policy and Management (ESHPM, Erasmus University&hellip;
- [Watch our Webinar on myeloma and infections](https://www.mpeurope.org/watch-our-webinar-on-myeloma-and-infections/): We held our latest webinar on September 11th, called Myeloma and infection: clinical and lived perspectives for myeloma patients, carers and advocates. Jackie Quinn, Myeloma Clinical Nurse Specialist, Belfast Trust presented on how myeloma and treatments increase infection risk, covering immunisations, bispecific antibody risks, and preventive medications. Mimi Quinn, myeloma patient from Ireland shared her personal experience of infections during diagnosis and treatment, discussing how reduced immunity impacts her daily life and career. During the webinar, Solène Clavreul, Head of Medical Education and Scientific Engagement at MPE, also shared details of some new infection resources produced by MPE, which can be&hellip;
- [Shape your myeloma care: New MPE research highlights the power of shared decision-making in myeloma care](https://www.mpeurope.org/shape-your-myeloma-care-new-mpe-research-highlights-the-power-of-shared-decision-making-in-myeloma-care/): Myeloma is a form of blood cancer. At diagnosis, and at each relapse, myeloma patients are confronted with complex treatment and care decisions that may feel overwhelming. What are my options? What are the side effects? How will it affect my quality of life? The questions you have regarding your care choices are deeply personal and important for healthcare professionals to know when discussing your care. Including what is important to you can help to shape your treatments and care to better fit your needs and preferences.   Given how important this topic is, we&#8217;re excited to share our new research&hellip;
- [Myeloma and infection: clinical and lived perspectives webinar](https://www.mpeurope.org/myeloma-and-infection-clinical-and-lived-perspectives-webinar/): Myeloma Patients Europe (MPE) will host a webinar on “Myeloma and infection: clinical and lived perspectives” on Thursday, 11th September 2025 from 17:00 – 18:00 CEST. Aimed at myeloma patients, carers and patient advocates, the webinar will feature presentations on infection risk and prevention in myeloma, and a patient’s experiences of infection in myeloma. Jackie Quinn, Myeloma Clinical Nurse Specialist, Belfast Trust will present information on how myeloma and its treatments increase infection risk, and how patients can help protect themselves against infection. This will include topics such as immunisations (vaccines), infection risk associated with bispecific antibodies and medications that help&hellip;
- [The European Commission grants final authorisation for isatuximab (Sarclisa®) for transplant eligible newly diagnosed myeloma patients](https://www.mpeurope.org/approval-for-isatuximab-for-transplant-eligible-newly-diagnosed-myeloma-patients/): The European Commission (EC) has approved isatuximab (Sarclisa®) in combination with bortezomib, lenalidomide, and dexamethasone (VRd) for the induction (i.e., initial) treatment of newly diagnosed myeloma patients (NDMM) who are eligible for autologous stem cell transplant. The decision follows an earlier positive recommendation of the European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP – their scientific advisory committee) on 19 June 2025. Marketing authorisation means that isatuximab is safe and effective for use in transplant eligible newly diagnosed myeloma patients. However, it should be noted that national patient access will further depend on the company’s marketing decisions and&hellip;
- [The European Commission grants final authorisation for belantamab mafodotin (Blenrep®) combinations for relapsed/refractory myeloma patients](https://www.mpeurope.org/the-european-commission-grants-final-authorisation-for-belantamab-mafodotin-blenrep-combinations-for-relapsed-refractory-myeloma-patients/): Two belantamab mafodotin (Blenrep®) combinations, with bortezomib and dexamethasone or pomalidomide and dexamethasone, are now authorised for use in the European Union. The decision follows an earlier positive recommendation of European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP – their scientific advisory committee) on 23 May 2025. Marketing authorisation means that belantamab mafodotin is safe and effective for use in relapsed myeloma patients. However, it should be noted that national patient access will further depend on the company’s marketing decisions and on national healthcare system assessments and approvals. The two phase III clinical trials (i.e., large&hellip;
- [European Commission approves first treatment for high-risk smouldering myeloma](https://www.mpeurope.org/european-commission-approves-first-treatment-for-high-risk-smouldering-myeloma/): The European Commission (EC) has approved a new indication for daratumumab (Darzalex®) for the treatment of adult patients with smouldering myeloma (SMM) at high-risk of developing myeloma. This follows a positive recommendation from the Committee for Medicinal Product for Human Use (CHMP) in June 2025. The CHMP is the European Medicines Agency’s (EMA) committee playing a significant role in the assessment and authorisation of human medicines. Daratumumab is a monoclonal antibody designed to recognise and bind to the CD38 protein, which is found on the surface of myeloma cells. By attaching to CD38, daratumumab kills myeloma cells. It also activates&hellip;
- [MPE member spotlight: Multiple Myeloma Ireland](https://www.mpeurope.org/mpe-member-spotlight-multiple-myeloma-ireland/): On May 23rd,&nbsp;MPE&nbsp;member organisation, Multiple Myeloma Ireland (MMI) successfully hosted its 2025 Patient and&nbsp;Family Information Day at the Ashling Hotel in Dublin. Multiple Myeloma Ireland is the only charitable organisation in Ireland focused exclusively on supporting patients, families and carers with myeloma and related conditions. As a valued member of Myeloma Patients Europe (MPE), MMI strives to improve quality of life through education, advocacy and community support. The event brought together over 100 patients, carers, healthcare professionals and advocates for education, support and community building around myeloma and AL amyloidosis care. Professor Paul Browne, recently appointed as Chair of MMI,&nbsp;opened&hellip;
- [EMA CHMP gives positive opinion on daratumumab use in smouldering myeloma patients with high risk of developing myeloma](https://www.mpeurope.org/ema-chmp-gives-positive-opinion-on-daratumumab-use-in-smouldering-myeloma-patients-with-high-risk-of-developing-myeloma/): On the 19th June 2025, the Committee for Medicinal Products for Human Use (CHMP) recommended  marketing authorisation for daratumumab for patients with high-risk smouldering myeloma. Daratumumab is a monoclonal antibody marketed by Johnson &amp; Johnson as Darzalex®. This medicine has been designed to recognise and bind to the CD38 protein, which is found on the surface of myeloma cells. By attaching to CD38, daratumumab kills myeloma cells. It also activates the immune system to find and kill more myeloma cells. It is currently used on its own (i.e., monotherapy) or in combination with other myeloma treatments at various stages of myeloma.&hellip;
- [EHA 2025 | Expert interviews](https://www.mpeurope.org/eha-2025-expert-interviews/): During the European Hematology Association (EHA) Annual Congress 2025, MPE conducted a series of expert interviews covering the most interesting updates in myeloma. These interviews focused on important research results and their potential to improve patient survival and quality of life. Dr. Sundar Jagannath discusses the long-term remission and survival for relapsed/refractory patients after treatment with ciltacabtagene autoleucel from the CARTITUDE-1 study, and considers a definition of cure in myeloma. Watch here. &nbsp; We spoke with Monique Minnema about the initial phase 1 results of JNJ-5322, a novel, next-generation trispecific antibody, in patients with relapsed/refractory myeloma. Watch here. &nbsp; Shaji Kumar presents&hellip;
- [Join our EHA 2025 highlights webinar](https://www.mpeurope.org/join-our-eha-2025-highlights-webinar/): To help patients and advocates digest the most important myeloma news from the European Hematology Association (EHA) 2025 Annual Congress, the largest haematology event in Europe, Myeloma Patients Europe (MPE) will host a webinar on Tuesday, 24 June at 17:00 CET. The session will be led by Dr. Ulf-Henrik Mellqvist, Haematologist and Associate Professor at Södra Älvsborgs sjukhus and Sahlgrenska University Hospital, Sweden. Dr. Mellqvist will provide a patient-friendly summary of key takeaways from the congress and will respond to questions from the audience. Meet the speaker Dr. Ulf-Henrik Mellqvist is a haematologist and an academic researcher. He is currently&hellip;
- [Myeloma EHA 2025 preview](https://www.mpeurope.org/myeloma-eha-2025-preview/): The European Hematology Association (EHA) 2025 Annual Congress, the largest haematology event in Europe, will take place from 12 &#8211; 15 June in Milan, Italy. The meeting will bring together experts from across the globe to present the latest advances in haematological diseases, including myeloma. Myeloma Patients Europe (MPE) will be attending the congress to keep the patient community informed about key developments in treatment and care. Throughout the event, MPE will share real-time updates via its social media channels (Facebook, LinkedIn, X and YouTube), including expert video interviews and key highlights from the scientific sessions. MPE will also participate&hellip;
- [EMA CHMP gives positive opinion on belantamab mafodotin combinations for relapsed/refractory myeloma patients](https://www.mpeurope.org/ema-chmp-gives-positive-opinion-on-belantamab-mafodotin-combinations-for-relapsed-refractory-myeloma-patients/): On the 23 May 2025, the Committee for Medicinal Products for Human Use (CHMP) recommended the approval of two belantamab mafodotin combinations for the treatment of patients with relapsed and/or refractory myeloma. The first combination is with bortezomib (a proteasome inhibitor) plus the steroid dexamethasone (BVd) in patients who have received at least one prior therapy. The second one is with pomalidomide (an immunomodulatory drug) plus dexamethasone (BPd) in patients who have received at least one prior therapy including lenalidomide (an immunomodulatory drug or IMiD). The CHMP is the European Medicines Agency’s (the medicines licensing body in the EU) committee responsible&hellip;
- [AL amyloidosis phase III clinical trial of birtamimab fails to meet primary endpoint](https://www.mpeurope.org/al-amyloidosis-phase-iii-clinical-trial-of-birtamimab-fails-to-meet-primary-endpoint/): Prothena, the pharmaceutical company that produce the AL amyloidosis drug birtamimab, have announced that the Phase III AFFIRM-AL clinical trial failed to meet its primary endpoint – i.e., the main result being measured in the trial to determine whether the treatment was effective. This means that the trial failed to demonstrate that newly diagnosed AL amyloidosis patients, with severe heart involvement (Mayo Stage IV), had an improved survival from taking birtamimab. The AFFIRM-AL trial was also looking at two secondary endpoints, both of which were also not met. These were a 6-minute walk test distance and a Short Form-36 version&hellip;
- [Register now to join the webinar "Living well with AL amyloidosis"](https://www.mpeurope.org/register-now-to-join-the-webinar-living-well-with-al-amyloidosis/): Myeloma Patients Europe (MPE) will host a webinar on &#8220;Living well with AL amyloidosis&#8221; on Thursday, 5 June 2025 from 17:00 – 18:00 CEST. Aimed at AL amyloidosis patients and patient advocates, the webinar will feature presentations on supportive care for patients. Prof. Dr. Monique Minnema, Haematologist at the University Medical Centre Utrecht, will focus her presentation on managing the symptoms of AL amyloidosis and the side-effects of treatment. This will include topics such as recovering from transplantation and managing pain. Karin Aarsman, Haematology Nurse Practitioner, also at the University Medical Centre Utrecht, will then present an overview of the&hellip;
- [In Memoriam of Reidar Nordby](https://www.mpeurope.org/in-memoriam-of-reidar-nordby/): It is with great sadness that we share the news of the passing of our friend, colleague, and fellow patient advocate, Reidar Nordby. With his passing, Myeloma Patients Europe (MPE) has lost not only a dear friend but also a valued Board member since 2023, who contributed to the growth and development of our organisation. He was a dedicated patient advocate who approached life with resounding hope and optimism. We are deeply grateful for his tireless work to improve the lives of people living with myeloma. A Mechanical Engineering graduate from Heriot-Watt University in Edinburgh, Reidar worked in the private&hellip;
- [European Commission approves linvoseltamab for the treatment of relapsed and refractory myeloma](https://www.mpeurope.org/european-commission-approves-linvoseltamab-for-the-treatment-of-relapsed-and-refractory-myeloma/): On 23th April 2025, the European Commission has granted conditional marketing approval of linvoseltamab to treat adults with relapsed and refractory myeloma. Conditional approval means that linvoseltamab will be reassessed for safety and efficacy when the results of other, larger clinical trials become available. This approval is based on the favourable recommendation issued by the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA – the European medicines licensing body) in February 2025, following the positive results of the LINKER-MM1 study. The CHMP is the EMA committee playing a significant role in the assessment and&hellip;
- [Register now to join the webinar 'How do different countries make decisions on reimbursing new medicines?'](https://www.mpeurope.org/register-now-to-join-the-webinar-how-do-different-countries-make-decisions-on-reimbursing-new-medicines/): The Horizon Europe funded project ASCERTAIN invites you to the webinar “How do different countries make decisions on reimbursing new medicines?” The webinar will take place on Wednesday 2nd April 2025, from 16:00 to 17:30 CET.  The webinar will be given by Tom Belleman, PhD candidate at the Erasmus School of Health Policy and Management (ESHPM), Erasmus University Rotterdam, who will deliver a 45-minute presentation, followed by a 30-minute Q&amp;A session to address your questions. Registration is free of charge. If you are interested in attending or know someone who might benefit from this session, please forward the registration link.&hellip;
- [EMA CHMP gives positive opinion on linvoseltamab for relapsed/refractory myeloma patients](https://www.mpeurope.org/ema-chmp-gives-positive-opinion-on-linvoseltamab-for-relapsed-refractory-myeloma-patients/): On 27th February 2025, the Committee for Medicinal Products for Human Use (CHMP) recommended the approval of linvoseltamab for the treatment of patients with relapsed/refractory multiple myeloma. The CHMP is the European Medicines Agency’s committee responsible for opinions on all issues regarding medicinal products for human use. Based on these opinions, then the European Commission will decide to authorise or not a human medicine. Linvoseltamab is a bispecific monoclonal antibody medication marketed by Regeneron as Lynozyfic®. The full indication proposed for approval is for the treatment of relapsed/refractory myeloma in patients who have received at least three prior therapies and&hellip;
- [#FacesOfMyeloma: Maureen’s path to living well with myeloma](https://www.mpeurope.org/facesofmyeloma-maureens-path-to-living-well-with-myeloma/): My name is Maureen , and I was diagnosed with Myeloma in 2017 at the age of 55 and was fortunate to have been invited to join a clinical trial. This was successful and my myeloma is currently in remission and being monitored. My diagnosis was life-changing, but I refuse to let myeloma define me. The most valuable thing my consultant told me was to view myeloma as a chronic condition. It will return at some point but there will be a number of treatment options available to me. This has given me a lot of comfort, helps me through my&hellip;
- [#FacesOfMyeloma: learning to live fully with myeloma](https://www.mpeurope.org/facesofmyeloma-learning-to-live-fully-with-myeloma/): My name is Ritva, and I live in Finland. I got my myeloma diagnosis four and a half years ago, when I was 63 years old. The first days after the diagnosis, I thought this is only a bad dream, but I had to accept the fact that myeloma was now part of my life. My family (husband, three adult children with their partners and one grandchild) helped me find hope and trust that my life will still be worth living. We became closer to each other and now speak about more difficult topics than before. My husband inspired me&hellip;
- [#FacesOfMyeloma: lessons from caring for a loved one with myeloma](https://www.mpeurope.org/facesofmyeloma-lessons-from-caring-for-a-loved-one-with-myeloma/): My name is Ariunsanaa and last year my mother was diagnosed with myeloma. At that time, both my sibling and I were living abroad. We soon realised there was no available treatment in our hometown, so we made the difficult decision to move her to an overseas location where she could receive proper care. Hearing a diagnosis of an unfamiliar disease is overwhelming. Fear, anger and confusion set in. I felt powerless, but I focused on what I could control. My priority was to find a haematologist in my mother’s new home town. I sought advice from others who had&hellip;
- [#FacesOfMyeloma: a story of hope and adaptation with Wouter](https://www.mpeurope.org/facesofmyeloma-a-story-of-hope-and-adaptation-with-wouter/): My name is Wouter, I am living in The Netherlands, and I am 55 years old. In March 2024, I was diagnosed with myeloma, which turned my world upside down. One of the biggest challenges I faced was the physical pain caused by my broken vertebrae. Learning to manage that pain while also coming to terms with the fact that myeloma is incurable was overwhelming at first. However, over time, I realised that while I could not change my diagnosis, I could change how I approached life with it. One of the most significant shifts I made was in my&hellip;
- [Europe's Beating Cancer Plan and its progress to date on rare cancers](https://www.mpeurope.org/europes-beating-cancer-plan-and-its-progress-to-date-on-rare-cancers/): Among the biggest policy initiatives targeting cancer at the European Union (EU) level, Europe&#8217;s Beating Cancer Plan is one of the most important and ambitious. Launched in 2021, it set to “tackle the entire disease pathway, from prevention to quality of life of cancer patients and survivors”. On 4 February 2025 the European Commission published a report reviewing the implementation of the Plan until the end of 2024. The findings, based on an extensive desk research as well as interviews, focus groups and workshops with a variety of stakeholders, including civil society organizations, indicate major accomplishments in areas such as&hellip;
- [MPE member spotlight: Fundacja Carita´s European Forum of Haemato-Oncological Patients](https://www.mpeurope.org/mpe-member-spotlight-fundacja-caritas-european-forum-of-haemato-oncological-patients/): We are proud to highlight the work of one of our Polish members, Fundacja Carita, which recently organised the European Forum of Hemato-Oncological Patients. This forum brought together experts and stakeholders to discuss crucial topics in haematology and patient advocacy. The event featured 12 discussion panels and lectures, delivered by 28 distinguished speakers from fields such as haematology, patient rights, AI and Telehealth, alongside representatives from the Ministry of Health. Attendees engaged in an educational and informative programme, fostering collaboration and knowledge exchange. Highlights from the event: Clinical trials session: MPE´s Scientific and Patient Information Manager, Katherine Jones, participated in&hellip;
- [Register for MPE´s European Young Myeloma Patients Group webinar on myeloma and physical fitness](https://www.mpeurope.org/register-for-mpes-european-young-myeloma-patients-group-webinar-on-myeloma-and-physical-fitness/): The European Young Myeloma Patients Group, created by Myeloma Patients Europe (MPE), invites you to a webinar focused on myeloma and physical fitness on Wednesday, 26 February 2025, from 16:00 – 17:00 CET. This session will be led by Ana Bernardino, PhD scholar in Human Motricity at the Faculty of Human Kinetics (FMH) at the University of Lisbon. Ana will deliver a 40-minute presentation covering the importance of physical fitness for myeloma patients, followed by a 20-minute Q&amp;A session to address your questions. Registration is open to all! If you are interested in attending, or know someone who might benefit from&hellip;
- [The European Commission approves isatuximab + VRd combination therapy for newly diagnosed, transplant ineligible myeloma patients](https://www.mpeurope.org/the-european-commission-approves-isatuximab-combination-therapy-for-newly-diagnosed-transplant-ineligible-myeloma-patients/): On 22 January 2025, the European Commission approved an isatuximab combination for the treatment of newly diagnosed myeloma patients who are not eligible for a stem cell transplant in the EU. This follows a positive recommendation from the Committee for Medicinal Product for Human Use (CHMP) in November 2024. The CHMP is the European Medicines Agency’s (EMA) committee playing a significant role in the assessment and authorisation of human medicines. The combination is of isatuxumab, which is marketed by Sanofi as Sarclisa ®, with a standard-of-care treatment regimen bortezomib, lenalidomide and dexamethasone (VRd). Isatuximab targets the CD38 protein, which is present on&hellip;
- [MPE at ASH 2024: key research and expert insights on myeloma](https://www.mpeurope.org/mpe-at-ash-2024-key-research-and-expert-insights-on-myeloma/): At the 2024 American Society of Hematology (ASH) Annual Meeting, Myeloma Patients Europe (MPE) interviewed experts about the most interesting studies and abstracts in myeloma and AL amyloidosis research that were presented during the conference. Our series of interviews highlights key findings and their impact on patient care: 🎥 Dr. Laurent Garderet discusses the IFM2017-03 phase 3 trial analysing a dexamethasone-sparing regimen with daratumumab and lenalidomide for frail patients with newly diagnosed myeloma. He highlights significant improvements in patients&#8217; progression-free survival (PFS) and quality of life. &nbsp; 🎥 Dr. Ciara Freeman breaks down the iMMagine-1 phase 2 clinical trial, focusing&hellip;
- [MPE Year in Review 2024](https://www.mpeurope.org/mpe-year-in-review-2024/): Myeloma Patients Europe (MPE) is proud to present its Year in Review 2024, highlighting achievements and milestones that reflect our commitment to improving outcomes and quality of life for myeloma and AL amyloidosis patients. This report showcases MPE’s expanded efforts to represent patient needs in European health policy, generate robust evidence that will improve patient experiences, address access challenges across Europe, deliver tools and resources that help empower member organisations, and more. As we look forward to the upcoming year, we remain dedicated to growing these efforts and driving improvements in patient treatment, care and access across Europe. Download the&hellip;
- [Myeloma and AL amyloidosis ASH 2024 preview](https://www.mpeurope.org/myeloma-and-al-amyloidosis-ash-2024-preview/): The American Society of Hematology (ASH) Annual Meeting, the world’s largest haematology conference, will take place from 7 – 10 December in San Diego, United States. It is a very exciting event for the myeloma and AL amyloidosis clinical and patient community, with all the results from the latest and most important research being presented. Myeloma Patients Europe (MPE) will attend the meeting to learn and share updates about the most significant developments in myeloma and AL amyloidosis. MPE will also meet with members, sponsors, European and US advocacy groups, myeloma doctors, researchers and other stakeholders to discuss ongoing projects&hellip;
- [MPE webinar on ASH 2024 myeloma and AL amyloidosis highlights](https://www.mpeurope.org/mpe-webinar-on-ash-2024-myeloma-and-al-amyloidosis-highlights/): Myeloma Patients Europe (MPE) will host a webinar covering key updates on myeloma and AL amyloidosis presented at the American Society of Hematology (ASH) Annual Meeting, which will take place from 7–10 December 2024 in San Diego, California, USA. The webinar will be held on Wednesday, 18 December 2024, from 17:00 – 18:00 CET. It will be led by Dr. Charlotte Pawlyn, a haematologist and clinician scientist, who will share insights into the latest findings and developments presented at ASH 2024. If you are unable to attend, you can submit your questions in advance to info@mpeurope.org, and we will ensure&hellip;
- [MPE provided feedback on the HTA Implementing Regulation on joint scientific consultations on medical devices and in vitro diagnostic medical devices at Union level](https://www.mpeurope.org/mpe-provided-feedback-on-the-hta-implementing-regulation-on-joint-scientific-consultations-on-medical-devices-and-in-vitro-diagnostic-medical-devices-at-union-level/): This week MPE provided feedback on the draft of the fifth implementing act (out of six planned to be adopted this year) paving the road for the application of the Health Technology Assessment (HTA) Regulation from 12 January 2025. The fifth implementing act focuses on joint scientific consultations on medical devices and in vitro diagnostic medical devices at Union level. A medical device is, according to the World Health Organization (WHO), “any instrument, apparatus, implement, machine, appliance, implant, reagent for in vitro use, software, material or other similar or related article, intended by the manufacturer to be used, alone or&hellip;
- [EMA CHMP gives positive opinion on isatuximab combination for newly diagnosed myeloma patients](https://www.mpeurope.org/ema-chmp-gives-positive-opinion-on-isatuximab-combination-for-newly-diagnosed-myeloma/): On 14 November 2024, the Committee for Medicinal Products for Human Use (CHMP) recommended adding a new indication for isatuximab, a monoclonal antibody treatment marketed by Sanofi as Sarclisa ®. The CHMP is the European Medicines Agency’s committee playing a significant role in the assessment and authorisation of human medicines. The new indication for isatuximab is for first-line treatment of newly diagnosed myeloma patients who are ineligible for stem cell transplant, in combination with bortezomib, lenalidomide and dexamethasone. Isatuximab binds to the CD38 protein, which is present on the surface of myeloma cells. By binding to this protein, isatuximab induces&hellip;
- [MPE comments on the European Medicines Agency's policy on the handling of competing interests of scientific committees' members and experts](https://www.mpeurope.org/mpe-comments-on-the-european-medicines-agencys-policy-on-the-handling-of-competing-interests-of-scientific-committees-members-and-experts/): Last week Myeloma Patients Europe (MPE) provided feedback, as part of a public consultation, on the new European Medicines Agency (EMA) policy on the handling of competing interests of scientific committees’ members and experts. The new policy increases restrictions for the participation of experts, including patient experts, in the EMA procedures assessing specific medical products. The measures are designed to safeguard the impartiality of experts by, for example, excluding from participation experts who have clear commercial and financial interests in the products assessed. But the measures also place limitations on, and potentially exclude, experts involved in advisory committees for companies&hellip;
- [The Reality of CAR T-cell Therapy: Am I Eligible?](https://www.mpeurope.org/the-reality-of-car-t-cell-therapy-am-i-eligible-2/)
- [MPE comments on the Implementing Regulation on joint scientific consultations on medicinal products for human use at Union level](https://www.mpeurope.org/mpe-comments-on-the-implementing-regulation-on-joint-scientific-consultations-on-medicinal-products-for-human-use-at-union-level/): Yesterday 28 October, MPE provided feedback, as part of a public consultation open to all categories of stakeholders, on the Implementing Regulation on joint scientific consultations on medicinal products for human use at Union level. This is the fourth implementing act (out of six planned to be adopted this year) paving the road for the application of the Health Technology Assessment (HTA) Regulation from January 2025. Joint Scientific Consultations (JSCs) offer medicine developers the opportunity to obtain feedback from regulators and HTA bodies in Member States on the evidence needed to be submitted as part of subsequent HTA regulatory approvals.&hellip;
- [Watch the webinar "Importance of good nutrition and healthy diet for young myeloma patients"](https://www.mpeurope.org/nutrition-for-myeloma-patients/): The Myeloma Patients Europe (MPE) European Young Myeloma Patient Group (EYMPG)  held the webinar &#8220;Importance of good nutrition and healthy diet for young myeloma patients&#8221;. The webinar was given by Inês Almada Correia, Nutritionist specialising in Oncology and Autoimmunity, from Portugal. Watch the recording below: &nbsp; &nbsp; Learn more about the EYMPG here.
- [MPE Members take part in European Myeloma Day](https://www.mpeurope.org/mpe-members-take-part-in-european-myeloma-day/): September is an important month for Myeloma Patients Europe (MPE) and our members. Each year, as part of Blood Cancer Awareness Month, we hold European Myeloma Day on 27 September. This year focused on highlighting the role of clinical trials in advancing myeloma treatments and improving patients&#8217; quality of life. Throughout September, our members organised different activities to raise awareness of myeloma and AL amyloidosis and advocate for patients&#8217; and carers&#8217; needs. Below find a summary of the activities that took place across our network. Congratulations to all our members on these successful initiatives! &nbsp; Association of Myeloma Patients in Bosnia and Herzegovina The Association of Myeloma Patients&hellip;
- [During European Myeloma Day, MPE highlights the importance of improving access to clinical trials](https://www.mpeurope.org/during-european-myeloma-day-mpe-highlights-the-importance-of-improving-access-to-clinical-trials/): Brussels, 27 September 2024 – Today is European Myeloma Day, a date dedicated to raising awareness of key issues affecting myeloma patients across Europe. This year, Myeloma Patients Europe (MPE) is highlighting the role of clinical trials in advancing myeloma treatments and improving patients Quality of Life (QoL). Despite of the importance of clinical trials in developing new treatments, there are still huge barriers that need to be addressed in order to improve patient access and ensure trials appropriately measure the impact on patient quality of life. Prof. Dr. Philippe Moreau, Head of Haematology Department, University Hospital of Nantes, France&hellip;
- [EMA recommends a new indication for daratumumab in adult patients with newly diagnosed myeloma who are eligible for autologous stem cell transplant](https://www.mpeurope.org/the-ema-recommends-a-new-indication-for-daratumumab-in-adult-patients-with-newly-diagnosed-myeloma-who-are-eligible-for-autologous-stem-cell-transplant/): On 19 September the European Medicines Agency (EMA)’s Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion recommending a new indication for daratumumab (Darzalex®, commercialised by Janssen). The new indication is a combination of daratumumab, bortezomib, lenalidomide and dexamethasone and it brings a significant benefit with respect to progression-free survival compared to the standard of care for transplantation-eligible patients with newly diagnosed multiple myeloma (induction therapy with bortezomib, lenalidomide, and dexamethasone (VRd) followed by autologous stem-cell transplantation, consolidation therapy with VRd, and maintenance therapy with lenalidomide) (source: Sonneveld et al. 2024). The decision was based on the&hellip;
- [Living with myeloma finding my way to greater well-being](https://www.mpeurope.org/living-with-myeloma-finding-my-way-to-greater-well-being/): Every myeloma patient has a story to tell. And every story captures a very personal experience of our incurable blood cancer. Living with myeloma is more than navigating the physical challenges of illness and treatment. It is also about finding a path through mental health issues: toxic thoughts, rollercoaster emotions and imperilled well-being. Because myeloma remains incurable, ultimately the journey is about accepting that the end of one’s life may be near. In short, we confront the spectre of death. Here is my story of living with myeloma. I have always been a healthy, high-energy person. Well into my late&hellip;
- [A second bispecific antibody is approved as a fourth-line treatment for myeloma in England and Wales](https://www.mpeurope.org/a-second-bispecific-antibody-is-approved-as-a-fourth-line-treatment-for-myeloma-in-england-and-wales/): After the approval of the first bispecific antibody for myeloma last month, the National Institute for Health and Care Excellence (NICE, the United Kingdom’s public body for medicine appraisals) approved today, 16 July 2024, a second bispecific drug, teclistamab. Commercially known as Tecvayli® and marketed by Janssen, the drug has been approved for people at fourth line and beyond, with a few further restrictions. Please click here to read more about this approval in England and Wales and the efforts of Myeloma UK to push for wider patient access. To find out more about teclistamab please see MPE’s factsheet on&hellip;
- [The National Institute for Health and Care Excellence (NICE) approves the use of elranatamab as a fourth-line treatment for myeloma in England and Wales](https://www.mpeurope.org/the-national-institute-for-health-and-care-excellence-nice-approves-the-use-of-elranatamab-as-a-fourth-line-treatment-for-myeloma-in-england-and-wales/): &nbsp; On the 21st of June NICE, the United Kingdom’s public body for medicine appraisals, approved the use of the UK’s first bispecific drug for myeloma, elranatamab. Evidence from an ongoing clinical trial showed that the drug can increase the length of time people are in remission. Based on this evidence, elranatamab, commercially known as Elrexfio® and marketed by Pfizer, is recommended with restrictions to be used by the National Health Service (NHS) in England and Wales: As a monotherapy after a minimum of three prior therapies, including an immunomodulatory agent (such as lenalidomide, pomalidomide or thalidomide), a proteasome inhibitor&hellip;
- [MPE comments on the second implementing act of the EU health technology assessment (HTA) regulation (EU HTAR)](https://www.mpeurope.org/mpe-comments-on-the-second-implementing-act-of-the-eu-health-technology-assessment-hta-regulation-eu-htar/): The EU Health Technology Assessment (HTA) Regulation (EU HTAR) entered into force in January 2022 and will be applied starting in January 2025. It aims to improve the availability of medicines and certain medical devices by establishing EU level joint clinical assessments and joint scientific consultations. It also sets rules for the involvement of patients, clinical experts and other relevant experts. Following the first implementing act supporting EU HTAR, to which MPE provided detailed feedback in April 2024, the European Commission recently opened consultation on the second implementing act. The focus of this second implementing act is on procedural rules for assessing and managing conflicts of&hellip;
- [Watch the recording of webinar “AL amyloidosis treatment updates and patient experiences”](https://www.mpeurope.org/al-amyloidosis-webinar/): Myeloma Patients Europe (MPE) held a webinar to summarise the most important AL amyloidosis updates and share patient experiences with therapies like CAR-T and CAEL-101. The webinar took place on 16th April 2024 and was given by Dr. Moshe Gatt, Physician Researcher Haematologist at the Hebrew University of Jerusalem, Israel, along with two AL Amyloidosis patients from Israel, Naphtali Mastboim and Melvin Granatstein. Watch the recording below:
- [European Commission approves CAR T-cell therapy ciltacabtagene autoleucel in earlier lines of therapy for relapsed and refractory myeloma](https://www.mpeurope.org/european-commission-approves-car-t-cell-therapy-ciltacabtagene-autoleucel-in-earlier-lines-of-therapy-for-relapsed-and-refractory-myeloma/): The European Commission has approved marketing authorisation extension for the CAR-T treatment ciltacabtagene autoleucel (Carvytki®), also known as cilta-cel, for use in patients who have received at least one prior therapy, including an immunomodulatory agent (IMiD – such as lenalidomide and pomalidomide) and a proteasome inhibitor (PI – such as bortezomib or carfilzomib), have demonstrated disease progression on the last therapy and are refractory (i.e. no longer responding) to lenalidomide. This follows an earlier positive recommendation from the EMA – Committee for Medicinal Product for Human Use (CHMP), after which the European Commission had 60 days to ratify. The Commission´s decision is based&hellip;
- [MPE launches the Myeloma and AL Amyloidosis European Clinical Trial Navigator](https://www.mpeurope.org/mpe-launches-the-myeloma-and-al-amyloidosis-european-clinical-trial-navigator/): Brussels, 23 April 2024 – Myeloma Patients Europe (MPE) has launched today the English version of the Myeloma and AL Amyloidosis European Clinical Trial Navigator, an online search tool to learn about and find clinical trials for myeloma, monoclonal gammopathy of undetermined significance (MGUS), smouldering multiple myeloma (SMM) and AL amyloidosis in Europe. With this tool, MPE wants to facilitate the search of clinical trials for these conditions and provide to patients, carers and advocates a patient-friendly tool not only to find clinical trials but also to know about their availability and location. &nbsp; Solène Clavreul, PhD, Head of Medical Education and Scientific Engagement at MPE, explained: “Many&hellip;
- [Q&A: US Food and Drug Administration (FDA) approves MRD as a basis for accelerated approval in myeloma](https://www.mpeurope.org/qa-us-food-and-drug-administration-fda-approves-mrd-as-a-basis-for-accelerated-approval-in-myeloma/): Last Friday, the US FDA’s Oncology Drugs Advisory Committee (ODAC) (FDA being the US medicines regulator) voted 12 – 0 to approve minimal residual disease (MRD) as an accepted endpoint for accelerated approval of new myeloma drugs. The committee’s primary role is to review benefit-risk data of new cancer drugs. You can see the full meeting and evidence considered here. The decision means that myeloma drugs may now be approved earlier in the US based on clinical trial data measuring MRD. MRD is approved as an intermediate endpoint. Following the FDA decision, MPE spoke to Dr Bruno Paiva, Director of Flow Cytometry and&hellip;
- [MPE gives feedback on the proposed implementing act supporting the EU Health Technology Assessment regulation](https://www.mpeurope.org/mpe-gives-feedback-on-the-proposed-implementing-act-supporting-the-eu-health-technology-assessment-regulation/): The European Commission recently held an online public consultation on the first draft implementing act supporting the EU health technology assessment (HTA) regulation. The EU HTA regulation will be implemented from 2025 and aims to increase the collaboration on health technology assessment across EU member states. Implementing acts set out the legislative detail of different elements of a regulation. The first of six implementing acts, the draft outlines the process for conducting joint clinical assessments (JCA) of new medicines and how patient experts will be involved. MPE provided detailed feedback on the proposed implementing act. Specifically, MPE called for: Stronger&hellip;
- [Sign up for the MPE webinar “AL amyloidosis treatment updates and patient experiences on new therapies”](https://www.mpeurope.org/sign-up-for-the-mpe-webinar-al-amyloidosis-treatment-updates-and-patient-experiences-on-new-therapies/): Myeloma Patients Europe (MPE) will hold the webinar “AL amyloidosis treatment updates and patient experiences on new therapies” on Tuesday 16 April from 17:00 – 18:00 CEST. The webinar will be given by Dr. Moshe Gatt, Physician Researcher Haematologist at the Hebrew University of Jerusalem, Israel, along with two AL Amyloidosis patients from Israel, Naphtali Mastboim and Melvin Granatstein, who will share their experiences with new therapies like CAR-T and CAEL-101. If you would like to attend, click here and register now! Should you be unable to attend the webinar, please feel free to send your questions in advance to info@mpeurope.org and we will make sure they reach our&hellip;
- [Snežana Doder, young myeloma patient: "When I talk about my journey, I compare it to a roller coaster. Everything happened very fast and unexpectedly"](https://www.mpeurope.org/snezana-doder-young-myeloma-patient-when-i-talk-about-my-journey-i-compare-it-to-a-roller-coaster-everything-happened-very-fast-and-unexpectedly/): &nbsp; My name is Snežana Doder and I´m from Serbia. When I talk about my journey, I compare it to a roller coaster. Everything happened very fast and unexpectedly. I had a very healthy lifestyle before and underwent regular medical checkups. I am certain that this is why I discovered everything just in time, or even earlier. I was diagnosed completely by accident. I had not experienced any symptoms. Still, I found out that I was a high-risk patient. I was first diagnosed with breast cancer in October 2021. It was discovered during a regular annual medical checkup, followed by&hellip;
- [European Commission grants final approval for CAR-T treatment idecabtagene vicleucel (Abecma) in earlier lines of therapy for relapsed and refractory myeloma](https://www.mpeurope.org/european-commission-grants-final-approval-for-car-t-treatment-idecabtagene-vicleucel-abecma-in-earlier-lines-of-therapy-for-relapsed-and-refractory-myeloma/): The European Commission has granted the final approval for the extension of the marketing authorisation for idecabtagene vicleucel (ide-cel), a CAR-T treatment marketed by Bristol-Myers Squibb (BMS) as Abecma®. Ide-cel has previously been approved for the treatment of patients with relapsed and refractory myeloma, who have received at least three previous lines of therapy. The extension means that ide-cel will now be indicated for the treatment of patients with relapsed and refractory myeloma who have undergone at least two prior therapies, including an immunomodulatory agent (IMiD – such as lenalidomide and pomalidomide), a proteasome inhibitor (PI – such as bortezomib&hellip;
- [Ana Rocha, young myeloma patient: "I didn't let the diagnosis change me and I thought I should build something to help others newly diagnosed"](https://www.mpeurope.org/ana-rocha-young-myeloma-patient-i-didnt-let-the-diagnosis-change-me-and-i-thought-i-should-build-something-to-help-others-newly-diagnosed/): After the diagnosis, it took almost a month to start the treatments. The first one was on my birthday, and I felt that the universe was giving me a unique opportunity. I did six cycles on the cyclophosphamide, bortezomib and dexamethasone (CyborD) protocol and one year later I had a tandem (double) transplant. When I was diagnosed, I had gone to university to study nursing. I only completed one semester and couldn´t go on with the pain I was experiencing.  After being admitted to the hospital, I had to drop out. My dream was taken away from me. However, I&hellip;
- [EMA CHMP gives positive recommendation on CAR T-cell therapy ciltacabtagene autoleucel in earlier lines of therapy for relapsed and refractory myeloma](https://www.mpeurope.org/ema-chmp-gives-positive-recommendation-on-car-t-cell-therapy-ciltacabtagene-autoleucel-in-earlier-lines-of-therapy-for-relapsed-and-refractory-myeloma/): The Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMA – the EU medicines regulator) has today given a positive recommendation for the extension of the marketing authorisation for the CAR-T treatment ciltacabtagene autoleucel (Carvytki®), also known as cilta-cel, for use in patients who have received at least 1 prior therapy. The full wording of the license extension is as follows: &nbsp; Carvykti is indicated for the treatment of adult patients with relapsed and refractory multiple myeloma, who have received at least one prior therapy, including an immunomodulatory agent, and a proteasome inhibitor, have demonstrated&hellip;
- [US FDA approves bi-weekly teclistamab dosing in relapsed/refractory myeloma](https://www.mpeurope.org/us-fda-approves-bi-weekly-teclistamab-dosing-in-relapsed-refractory-myeloma/): The US Food and Drug Administration (FDA – the medicines regulator in the US) has granted approval to a “supplemental biologics license application” for teclistamab-cqvy (Tecvayli®). This means the existing FDA teclistamab license has been extended to include administration at a reduced dosing frequency of 1.5 mg/kg every two weeks, instead of once weekly (as is currently the case) for patients with relapsed/refractory myeloma who have maintained a sustained complete response (CR – a very deep response to treatment) or better for at least 6 months. &nbsp; Teclistamab-cqvy is administered subcutaneously. It is currently approved in the US for the treatment of&hellip;
- [AMEN provides medical information for Arabic speakers in Israel and beyond](https://www.mpeurope.org/amen-provides-medical-information-for-arabic-speakers-in-israel-and-beyond-2/): The population of Israel today is 9.8 million people. Among them, 20% are Arabs (about 2 million people) whose first language is Arabic. Due to this, the Israel Multiple Myeloma Association, AMEN, decided to promote multiple activities that will support Arabic-speaking patients with information about myeloma. &nbsp; The activities included: A website in Arabic, similar to the one that is running in Hebrew. Translation of an online system that searches the relevant rights of the patients into Arabic. According to an individual´s medical and personal condition, the system gives each patient the relevant rights, including assistance in obtaining them. A Facebook&hellip;
- [GSK announces results from interim analysis of the DREAMM-7 phase III trial](https://www.mpeurope.org/gsk-announces-results-from-interim-analysis-of-the-dreamm-7-phase-iii-trial/): On 6 February 2024, GlaxoSmithKline (GSK) announced results from an interim analysis of the DREAMM-7 phase III trial presented at an American Society of Clinical Oncology (ASCO) online plenary session. The trial is evaluating belantamab mafodotin (“belamaf” or trade name Blenrep®) combined with bortezomib plus dexamethasone (BorDex) versus daratumumab plus BorDex in second line and later treatment of relapsed or refractory myeloma. &nbsp; Key results from the presentation include: A main research question in the trial (also known as a “primary endpoint”) was how progression free survival (PFS – the length of time before the disease progresses) compared between the&hellip;
- [Sign up for the MPE webinar "Basics of medicines pricing in Europe"](https://www.mpeurope.org/basics-of-medicines-pricing-in-europe/): Myeloma Patients Europe (MPE) will hold the webinar &#8220;Basics of medicines pricing in Europe&#8221; on Thursday 7th March 2024 from 15:00 – 16:30 CET. Through this webinar you will understand the basics of drug pricing (with a focus on high-cost branded medicines) and the processes and policies that influence it. The webinar will be given by Sabine Vogler, Director of the WHO Collaborating Centre for Pharmaceutical Pricing and Reimbursement Policies and Head of Pharmacoeconomics Department, Austrian National Public Health Institute, who will give a 45-minute presentation followed by a 30-minute Q&amp;A session. Registration is free of charge. The webinar will&hellip;
- [EMA CHMP gives positive opinion on CAR-T treatment idecabtagene vicleucel (Abecma) in earlier lines of therapy for relapsed and refractory myeloma](https://www.mpeurope.org/ema-chmp-gives-positive-opinion-on-car-t-treatment-idecabtagene-vicleucel-abecma-in-earlier-lines-of-therapy-for-relapsed-and-refractory-myeloma/): The Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMA) has given a positive recommendation for the extension of the marketing authorisation for idecabtagene vicleucel (ide-cel), a CAR-T treatment marketed by BMS as Abecma®. Ide-cel is currently approved for the treatment of patients with relapsed and refractory myeloma, who have received at least three previous lines of therapy. The extension means that ide-cel will now be indicated for the treatment of patients with relapsed and refractory myeloma who have undergone at least two prior therapies, including an immunomodulatory agent (IMiD – such as lenalidomide and&hellip;
- [MPE announces partnership in EU consortium project CERTAINTY: advancing cancer care through virtual twins in personalised immunotherapy](https://www.mpeurope.org/project-certainty-advancing-cancer-care-through-virtual-twins-in-personalised-immunotherapy/): MPE announces partnership with an international team, including representatives from scientific, industry, and healthcare sectors, as part of the EU-funded research project CERTAINTY, which began in December 2023. The EU consortium &#8220;CERTAINTY &#8211; A cellular immunotherapy virtual twin for personalized cancer treatment&#8221; is being funded by the European Union with almost EUR 10 million over the next 4.5 years within the Horizon Health 2023 program. The project, led by the Fraunhofer Institute for Cell Therapy and Immunology IZI, aims to develop a “virtual twin” that will improve treatment with personalised cancer immunotherapies in the future. In recent years, cancer immunotherapies have established&hellip;
- [ASH 2023 | Myeloma and AL amyloidosis updates](https://www.mpeurope.org/ash-2023-myeloma-and-al-amyloidosis-updates/): Myeloma Patients Europe (MPE) attended the 65th American Society of Hematology (ASH) Annual Meeting, the largest haematology congress, held from 9 to 12 December in San Diego (United States). MPE has interviewed haematology experts to summarise the latest myeloma and AL amyloidosis updates. &nbsp; Prof. Dr. Michel Delforge, Department of Haematology, University Hospital Leuven, Belgium, explains the latest findings on the KarMMa-3 trial and the impact abecma has on Quality of Life (QoL) presented at ASH 2023. Watch the video interview here. &nbsp; Dr. Moshe Gatt, Department of Haematology, Hebrew University of Jerusalem, Israel, explains the latest findings of the HBI0101&hellip;
- [EMA CHMP confirms recommendation for non-renewal of Blenrep marketing authorisation](https://www.mpeurope.org/ema-chmp-confirms-recommendation-for-non-renewal-of-blenrep-marketing-authorisation/): The European Medicines Agency (the EU medicines regulator) Committee for Medicinal Products for Human Use (CHMP) has today confirmed their earlier recommendation to not renew marketing authorisation for belamaf mafadotin (Blenrep®). The confirmation follows a review of the CHMP decision, requested by the manufacturer GSK. MPE Co-Chief Executive Officer, Kate Morgan, commented: “The final recommendation from the EMA CHMP is a disappointing one. Whilst we understand the limitations from the DREAMM-3 clinical trial data, we know that patients were benefitting from access to Blenrep in this heavily pre-treated setting – particularly where they were unable to access or tolerate other&hellip;
- [Sign up for the MPE webinar on ASH 2023 myeloma and AL amyloidosis highlights](https://www.mpeurope.org/sign-up-for-the-mpe-webinar-on-ash-2023-myeloma-and-al-amyloidosis-highlights/): Myeloma Patients Europe (MPE) will host a webinar to summarise the most important myeloma and AL amyloidosis updates presented at the 65th American Society of Hematology (ASH) Annual Meeting which will be held 9-12 December, 2023 in San Diego, California, United States. &nbsp; The webinar will take place on Wednesday, 17 January from 17:00 to 18:00 CET and will be given by Dr. Faith Davies, Director of Clinical Myeloma Programme at NYU Langone Health Perlmutter Cancer Center, New York, United States. &nbsp; If you would like to attend, click&nbsp;here&nbsp;and&nbsp;register now! Please feel free to send your questions in advance at&hellip;
- [The European Commission grants final approval for elranatamab for the treatment of relapsed or refractory myeloma](https://www.mpeurope.org/the-european-commission-grants-final-approval-for-elranatamab-for-the-treatment-of-relapsed-or-refractory-myeloma/): The European Commission has granted conditional marketing authorisation for elranatamab, also known as Elrexfio® marketed by the pharmaceutical company Pfizer. This follows an earlier positive recommendation from the European Medicines Agency (EMA – the EU drug licensing body) Committee for Medicinal Products for Human Use (CHMP), after which the European Commission had 60 days to ratify. The decision means that the product is safe and effective to prescribe in myeloma patients in the 27 EU member states, plus Norway, Iceland and Liechtenstein. However, for patients to access it, it usually requires a funding decision by national health authorities. Elranatamab is&hellip;
- [2023: Year in Review](https://www.mpeurope.org/2023-year-in-review/): On behalf of the Myeloma Patients Europe (MPE) Board of Directors and staff, we extend a heartfelt thank you to our members, sponsors and stakeholders for your dedication and inspiration. This year, MPE achieved significant milestones made possible by our collective efforts, and we are thrilled to present our Year in Review 2023. We hope you’ll take a moment to read this report, which highlights our key accomplishments focused on empowering, educating and supporting the patient community. As we look toward the year ahead, we remain committed to growing these initiatives and to advancing patient treatment, care and access throughout Europe.
- [Myeloma and AL amyloidosis ASH 2023 preview](https://www.mpeurope.org/myeloma-and-al-amyloidosis-ash-2023-preview/): The American Society of Hematology (ASH) Annual Meeting, the world’s largest haematology conference, will take place from 9 &#8211; 12 December in San Diego, United States. It is a very exciting event for the myeloma and AL amyloidosis clinical and patient community, with all the results from the latest and most important research being presented. Myeloma Patients Europe (MPE) will attend the meeting to learn and share updates about the most significant developments in myeloma and AL amyloidosis. MPE will also meet with members, sponsors, European and US advocacy groups, myeloma doctors, researchers and other stakeholders to discuss ongoing projects&hellip;
- [MPE launches a report focused on the impact of AL amyloidosis in quality of life](https://www.mpeurope.org/mpe-launches-a-report-focused-on-the-impact-of-al-amyloidosis-in-quality-of-life/): AL amyloidosis is a rare condition and limited research on patient perspectives and needs exists. With the aim to better understand patients&#8217; experiences regarding AL amyloidosis diagnosis and treatment, and how these impact on quality of life, MPE conducted qualitative research and published the report &#8220;Health-related quality of life, diagnosis and treatment experiences of AL amyloidosis patients.&#8221; According to this report, &#8220;receiving a diagnosis of AL amyloidosis can make people feel as if they have lost control and have uncertainty about the future. Despite this, many patients said they have faced their diagnosis and adapted to it. Over time, they&hellip;
- [ESMO 2023 | Patient Advocacy Track highlights challenges in access, caregiver support and digitalisation](https://www.mpeurope.org/esmo-2023-patient-advocacy-track-highlights-challenges-in-access-caregiver-support-and-digitalisation/): 35.000 people attended the European Society for Medical Oncology (ESMO) Annual Congress, held from 20 to 24 October in Madrid, Spain, where the latest data in oncology research and development was presented. Along with several updates, mostly in solid tumours, different advocacy topics were discussed as part of the Patient Advocacy Track. Myeloma Patients Europe (MPE) was represented by Kate Morgan, MPE Co-Chief Executive Officer, and Lise-lott Eriksson, MPE president who participated in one of the most important sessions of the ESMO Patient Advocacy Track: &#8220;How to improve access to medicines through patient engagement?&#8221; &nbsp; In myeloma there are currently&hellip;
- [MPE launches European Amyloidosis Diagnosis Pathway to promote early detection of the rare disease](https://www.mpeurope.org/mpe-launches-european-amyloidosis-diagnosis-pathway-to-promote-early-detection-of-the-rare-disease/): Today, 26 October 2023, is World Amyloidosis Day, a day dedicated to raising awareness about the rare disease amyloidosis and the key issues and challenges for patients. A central theme for the day, organised by the Amyloidosis Alliance, alongside amyloidosis patient organisations from across the globe, is improving the diagnosis experience of patients. Amyloidosis is a group of rare, serious conditions caused by a build-up of an abnormal protein called amyloid in organs and tissues throughout the body. The rarity of amyloidosis and the non-specificity of symptoms make it very difficult to diagnose.  The significance of an early diagnosis for&hellip;
- [MPE to present at European Society for Medical Oncology (ESMO) Annual Congress 2023](https://www.mpeurope.org/mpe-to-present-at-european-society-for-medical-oncology-esmo-annual-congress-2023/): Myeloma Patients Europe (MPE) will present as part of the Patient Advocacy Track at the European Society for Medical Oncology (ESMO) Annual Congress. The Congress will be held from 20 to 24 October in Madrid, Spain where the latest data in oncology research and development will be presented. Kate Morgan, MPE Co-Chief Executive Officer, and Lise-lott Eriksson, MPE Board President, will each give a talk during the patient advocacy session, “How to improve access to medicines through patient engagement?” Lise-lott Eriksson’s talk will address “Patient engagement and collaboration with national regulatory agencies” and Kate Morgan will present &nbsp;“A gap analysis&hellip;
- [EMA CHMP gives positive recommendation to elranatamab for the treatment of relapsed or refractory myeloma](https://www.mpeurope.org/ema-chmp-gives-positive-recommendation-to-elranatamab-for-the-treatment-of-relapsed-or-refractory-myeloma/): On October 12, 2023, the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMA) gave positive recommendation for the conditional marketing authorisation of elranatamab, also known as Elrexfio. The treatment will be offered as a 40 mg/ml solution for injection. Its active component, elranatamab, is a bispecific monoclonal antibody that targets the CD3 receptor on T cells and BCMA on plasma cells, including those in malignant multiple myeloma. Elranatamab is indicated as a monotherapy for adult patients with relapsed and refractory myeloma who have undergone a minimum of three prior therapies, including an immunomodulatory agent&hellip;
- [A statement from MPE on the situation in Israel and Gaza](https://www.mpeurope.org/a-note-from-mpe-on-the-situation-in-israel-and-gaza/): MPE and our community are extremely saddened by the ongoing and devastating events in Israel and Gaza. The death of hundreds of innocent people is completely unacceptable, and our deepest sympathy goes out to everyone affected. We know our members are continuing to provide support to patients and their families during this difficult time. All myeloma patients and caregivers in Israel who need support or have concerns should contact Varda Shoham from AMEN at: vardas02@gmail.com If you are an amyloidosis patient, please contact Rafi Amit from Amyloidosis Israel at: rafi@tactgroup.co.il Any other questions or requests for support from any patient&hellip;
- [24% of patients will wait 5 months or more to get a myeloma diagnosis](https://www.mpeurope.org/24-of-patients-will-wait-5-months-or-more-to-get-a-myeloma-diagnosis/): Today is European Myeloma Day, a date to raise awareness about the most important issues for European myeloma patients. The findings of a recent report developed by Myeloma Patients Europe (MPE) are the driving reason for early diagnosis to be the focus of European Myeloma Day this year. By raising awareness of myeloma and disseminating an important tool called Myeloma Diagnosis Pathway, the myeloma patient community aims to improve early diagnosis and therefore patients’ lives. Myeloma is a rare and incurable blood cancer and accounts for approximately 1% of all cancers. Early diagnosis of myeloma has been shown to minimise&hellip;
- [MPE attending International Myeloma Society (IMS) Annual Meeting in Athens](https://www.mpeurope.org/mpe-attending-international-myeloma-society-ims-annual-meeting-in-athens/): Myeloma Patients Europe (MPE) is attending the International Myeloma Society (IMS) Annual Meeting in Athens, Greece, from 27 &#8211; 30 September. This year, the IMS meeting corresponds with European Myeloma Day, allowing us to engage with the whole myeloma community to mark this important event. &nbsp; The IMS Annual Meeting brings together myeloma experts from research, nursing, clinical and patient advocacy backgrounds to discuss the latest knowledge and developments in the field. It is a particularly helpful meeting for discussing and interpreting what the latest scientific developments mean for patients in clinical practice across Europe. &nbsp; Highlights for MPE at&hellip;
- [EMA CHMP recommends non-renewal of marketing authorisation for Blenrep®](https://www.mpeurope.org/ema-chmp-recommends-non-renewal-of-marketing-authorisation-for-blenrep/): On September 15, 2023, the Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMA) has recommended non-renewal of marketing authorisation for belamaf mafadotin (Blenrep®). &nbsp; Blenrep is currently approved for myeloma patients who have received at least four previous treatments and have stopped responding to at least one proteasome inhibitor (e.g., bortezomib), one immunomodulatory agent (e.g., lenalidomide), and an anti-CD38 monoclonal antibody (e.g., daratumumab), and whose cancer has worsened since receiving the last treatment. &nbsp; GlaxoSmithKline (GSK), the company that manufactures Blenrep, have indicated they officially requested a re-evaluation of the CHMP recommendation and therefore,&hellip;
- [EMA recommends expansion of melphalan flufenamide (Pepaxti®) marketing authorisation](https://www.mpeurope.org/ema-recommends-expansion-of-melphalan-flufenamide-pepaxti-marketing-authorisation/): The Committee for Medicinal Products for Human Use (CHMP) at the European Medicines Agency (EMA) has granted a positive opinion on the application for an extended marketing authorisation (i.e. a license) for melphalan flufenamide (Pepaxti), also called melflufen. &nbsp; Melflufen, in combination with dexamethasone, &nbsp;is currently licenced in the EU for treating myeloma patients who have received at least three prior lines of therapy and are refractory to at least one proteasome inhibitor (such as bortezomib or carfilzomib), one immunomodulatory agent (such as lenalidomide or pomalidomide) and one anti-CD38 monoclonal antibody (such as daratumumab). &nbsp; According to the new decision,&hellip;
- [European Commission approves talquetamab for the treatment of relapsed and refractory myeloma](https://www.mpeurope.org/european-commission-approves-talquetamab-for-the-treatment-of-relapsed-and-refractory-myeloma/): The European Commission (EC) has granted conditional marketing approval to talquetamab (Talvey®) for the treatment of relapsed and refractory myeloma. These patients must have undergone at least three prior treatments, including an immunomodulatory agent (such as lenalidomide or pomalidomide), a proteasome inhibitor (such as bortezomib or carfilzomib), and an anti-CD38 antibody (such as daratumumab). Additionally, they must have demonstrated disease progression on their most recent therapy. &nbsp; Talquetamab is a bispecific antibody which targets the protein GPRC5D on myeloma cells and CD3 on the surface of T-cells. Talquetamab kills the myeloma by bringing both cell types into close contact. Conditional&hellip;
- [FDA approves elranatamab (ELREXFIO™) for relapsed or refractory myeloma](https://www.mpeurope.org/fda-approves-elranatamab-elrexfio-for-relapsed-or-refractory-myeloma/): On August 14, 2023, the United States Food and Drug Administration (FDA) granted accelerated approval to elranatamab-bcmm (Elrexfio, Pfizer, Inc.). &nbsp; According to the FDA, elranatamab is indicated for adults with relapsed or refractory multiple myeloma who have received at least four prior lines of therapy, including a proteasome inhibitor (such as bortezomib, carfilzomib or ixazomib), an immunomodulatory agent (such as lenalidomide, pomalidomide or thalidomide), and an anti-CD38 monoclonal antibody (such as daratumumab or isatuximab). &nbsp; Elranatamab is a bispecific antibody which targets BCMA on multiple myeloma cells and CD3 at the surface of T-cells. CD3 (cluster of differentiation 3)&hellip;
- [FDA grants talquetamab (TALVEY™) accelerated approval for relapsed or refractory myeloma](https://www.mpeurope.org/fda-grants-talquetamab-talvey-accelerated-approval-for-relapsed-or-refractory-myeloma/): On August 9, 2023, the United States Food and Drug Administration (FDA) granted accelerated approval to talquetamab-tgvs (Talvey, Janssen Biotech, Inc.). According to the FDA, talquetamab is indicated for adults with relapsed or refractory multiple myeloma who have received at least four prior lines of therapy, including a proteasome inhibitor (such as bortezomib, carfilzomib or ixazomib), an immunomodulatory agent (such as lenalidomide, pomalidomide or thalidomide), and an anti-CD38 monoclonal antibody (such as daratumumab or isatuximab). &nbsp; Talquetamab is a bispecific antibody which targets GPRC5D on myeloma cells and CD3 at the surface of T-cells. CD3 (cluster of differentiation 3) is&hellip;
- [Watch the recording of the EHA 2023 highlights webinar](https://www.mpeurope.org/eha-2023-myeloma-highlights/): Myeloma Patients Europe (MPE) held a webinar to summarise the most important myeloma and AL amyloidosis updates presented at the European Hematology Association (EHA) hybrid 2023 congress. This congress was held in Frankfurt, Germany, in June 2023. The webinar took place on 6th July 2023 and was given by Prof. Dr. Mohamad Mohty, Professor and Head of the Hematology and Cellular Therapy Department at the Saint-Antoine Hospital and Sorbonne University (Paris, France), who delivered a comprehensive 40-minute presentation, followed by an engaging 20-minute Q&amp;A session. Watch the recording below: &nbsp;
- [Myeloma Patients Europe report finds huge inequalities in access to myeloma clinical trials in Central and Eastern Europe](https://www.mpeurope.org/myeloma-patients-europe-report-finds-huge-inequalities-in-access-to-myeloma-clinical-trials-in-central-and-eastern-europe/): Myeloma Patients Europe (MPE) has today launched a first-of-its-kind advocacy report on Addressing access barriers to myeloma clinical trials in Central and Eastern Europe (CEE). The report, led by the MPE CEE Workgroup on Access, found huge inequalities for patients, confirming reports from MPE CEE members about a lack of clinical trials opening in the region and difficulties in patient participation. Biba Dodeva, MPE Board Member and Chair of the MPE CEE Workgroup on Access commented: “This is an important report which for the first time shines a light on the differences in myeloma trial access between countries and explores potential reasons&hellip;
- [Horizon2020 CARAMBA CAR-T interview series](https://www.mpeurope.org/horizon2020-caramba-car-t-interview-series/): From T-cell collection to CAR T-cell infusion Myeloma Patients Europe (MPE) has conducted four written interviews on CAR-T manufacturing to better understand various myeloma CAR-T therapies’ manufacturing processes and challenges. Four stakeholders have answered our questions, including two pharmaceutical companies, each with a myeloma CAR-T product approved in the European Union, and two academic teams which have developed myeloma CAR-T products currently under clinical investigation.   Interview of Janssen Pharmaceuticals on their CAR T-cell manufacturing process Interview of  Prof. Dr. Bönig, Goethe University, Frankfurt, Germany, on their CAR T-cell manufacturing process Interview of Hadassah Hebrew University Centre, Jerusalem, Israel, on their CAR&hellip;
- [Sign up for the MPE webinar on EHA myeloma and AL amyloidosis highlights ](https://www.mpeurope.org/sign-up-for-the-mpe-webinar-on-eha-myeloma-and-al-amyloidosis-highlights/): Myeloma Patients Europe (MPE) will host a webinar to summarise the most important myeloma and AL amyloidosis updates presented at the congress on 6 July 2023, from 17:00 – 18:00 CET, given by Prof. Dr. Mohamad Mohty, Professor and Head of the Hematology and cellular therapy department at the Saint-Antoine Hospital and Sorbonne University (Paris, France). If you would like to attend, click here and register now! The European Hematology Association (EHA) 2023 hybrid congress took place from 8-11 June 2023 in Frankfurt, Germany and continues until 15 June in a virtual format. MPE attended the congress and interviewed key experts on the most important&hellip;
- [EHA 2023 highlights in myeloma and AL amyloidosis](https://www.mpeurope.org/eha-2023-highlights-in-myeloma-and-al-amyloidosis/): The European Hematology Association’s (EHA) annual congress, one of the most important haematology congresses here in Europe, is being held in Frankfurt, Germany from 8 June to 15 June 2023 in a hybrid format. Myeloma Patients Europe (MPE) attended EHA 2023 in person and interviewed relevant myeloma and AL amyloidosis specialists to provide an overview of the key highlights in both diseases presented during this meeting. Watch below the main results of the following clinical trials: &nbsp; Redirectt-1 clinical trial. Dr María Victoria Mateos, Director of the Myeloma Unit at the University Hospital of Salamanca-IBSAL in Spain, summarises for MPE&hellip;
- [MPE appointed to new HTA Stakeholder Network](https://www.mpeurope.org/mpe-appointed-to-new-hta-stakeholder-network/): Myeloma Patients Europe (MPE) is pleased to announce it has been appointed to the new Health Technology Assessment (HTA) Stakeholder Network of the European Commission. This means that MPE will be actively engaged and consulted in the implementation of the EU HTA Regulation.
- [MPE interviews experts about different aspects of the CARAMBA clinical trial](https://www.mpeurope.org/mpe-interviews-experts-about-different-aspects-of-the-caramba-clinical-trial/): As part of the Horizon 2020 CARAMBA project, Myeloma Patients Europe (MPE) interviewed experts on different aspects of the CARAMBA clinical trial: manufacturing process, safety updates, and immune monitoring. The videos were filmed during the ASH annual meeting in December 2022. The CARAMBA project is a phase I/II clinical trial investigating innovative immunotherapy for treating myeloma, known as Chimeric Antigen Receptor T-cell therapy (CAR-T). Through strategic collaboration with a wide range of stakeholders, including MPE, the consortium aims to ensure the streamlined transition of CAR-T from the laboratory to myeloma patients in the clinic.   CARAMBA is specifically looking at&hellip;
- [Myeloma Patients Europe appoints joint CEOs](https://www.mpeurope.org/myeloma-patients-europe-appoints-joint-ceos/): Myeloma Patients Europe (MPE) is pleased to announce that Katie Joyner and Kate Morgan have been appointed as joint Chief Executive Officers (CEO). The MPE Board of Directors unanimously made this decision based on the impressive work and leadership both have shown during the transition period following the stepping down of founding CEO, Ananda Plate.
- [Listen the voice of myeloma patients in documentary “My myeloma: ready for the steps ahead”](https://www.mpeurope.org/listen-the-voice-of-myeloma-patients-in-documentary-my-myeloma-ready-for-the-steps-ahead/): March is Multiple Myeloma Awareness Month. This incurable disease affects increasingly young adult generation. In Europe, more than 50.900 people were diagnosed with myeloma in 2020[1]. &nbsp; Patient organisations from Central and Eastern Europe (CEE) have joined forces to create the documentary My myeloma: ready for the steps ahead, which premiered on 21th of March 2023 in Ljubljana, Slovenia. The premiere was attended by patient representatives, patient organisations, healthcare professionals and media representatives, who expressed their support in sharing the voice of myeloma patients and their needs. &nbsp; The patient stories, shared in the documentary were produced in collaboration with&hellip;
- [Happy anniversary AMILO!](https://www.mpeurope.org/mpe-member-spotlight-amilo/): One of the MPE Spanish members, the Spanish Amyloidosis Association (AMILO), last month celebrated its fifth anniversary by recognising the support and help other organisations have given them during these five years. MPE is pleased and proud to receive this recognition from AMILO at such an important event for our member. Along with MPE, other important national and international organisations were awarded, like the Amyloidosis Alliance and the Spanish Society of Hematology, represented by its president, Dr. María Victoria Mateos. During this event, AMILO advocated for better access to innovative treatments and more visibility for rare diseases like amyloidosis. The&hellip;

## Pages

- [MPE Masterclass 2026 | Registration form](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2026/mpe-masterclass-2026-registration-form/): Application deadline: 15 February 2026 Welcome to the registration page for the MPE Masterclass 2026, taking place in Lisbon, Portugal. Please complete the form below to register your interest in attending. If you have any questions, contact the MPE team at: agm@mpeurope.org
- [MPE Masterclass 2026 | Health and safety policy](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2026/mpe-masterclass-2026-health-and-safety-policy/): Myeloma Patients Europe (MPE) considers the health and safety of Masterclass participants a top priority and we would like to ensure that everyone involved is prepared for the trip. This is particularly important as many participants are patients and caregivers, who might have specific health and treatment considerations. Please let MPE know in advance if you have any health needs or concerns relating to your travel and stay that we can help address. Please ensure you have the necessary travel insurance for your trip, even if you have a European Health Insurance Card (EHIC), to cover any unforeseen health issues that may&hellip;
- [MPE Masterclass 2026 | Travel, expenses and reimbursement process and criteria](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2026/mpe-masterclass-2026-travel-expenses-and-reimbursement-process-and-criteria/): Travel Expenses Funding coverage: MPE provides funding for travel, accommodation and conference expenses. Eligibility: Full-member organisations: up to two representatives. Associate member groups and guests: one representative per group. Booking: All travel bookings must be made via the MPE travel portal – BizAway (not applicable to industry partners). After event registration, delegates will receive a personal booking link via email. Flights not booked through the MPE travel portal will not be reimbursed. Booking deadline: All flights must be booked by 28 February 2026. MPE will confirm your hotel booking only once your travel is booked. Budget limits: The maximum total&hellip;
- [MPE Masterclass 2026 | Agenda](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2026/mpe-masterclass-2026-agenda/): 24–26 April 2026 in Lisbon, Portugal Venue: Lisbon Marriott Hotel (Av. dos Combatentes 45, 1600-042 Lisboa, Portugal). Programme overview The MPE Masterclass 2026 will take place over one and a half days, combining scientific sessions, advocacy workshops and interactive group discussions. The event is designed to support MPE members in expanding their knowledge, sharing experiences and strengthening collaboration across Europe. A detailed agenda including session titles, speakers and times will be available soon. Stay tuned for updates on: Plenary sessions featuring leading experts in myeloma and amyloidosis Parallel breakout sessions focused on patient advocacy and organisational development Networking opportunities and interactive workshops&hellip;
- [MPE Masterclass 2026 | Venue and location information](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2026/mpe-masterclass-2026-venue-and-location-information/): The MPE Annual Masterclass will be held in Lisbon, Portugal from Friday, 24 April to Sunday, 26 April 2026. Venue Lisbon Marriott Hotel &#8211; Av. dos Combatentes 45, 1600-042 Lisboa, Portugal Nestled amid lush gardens, the Lisbon Marriott is a hidden gem offering the perfect balance between productivity and relaxation. It provides a calm, inspiring setting for congresses, educational programmes and networking sessions, ideal for learning and collaboration. Location and accessibility The hotel is conveniently located near Lisbon Airport, major transport hubs and the historic city centre, making it easily accessible for all participants. Distance from Lisbon Airport: 6.5 km Nearby public&hellip;
- [MPE Masterclass 2026](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2026/): 24–26 April 2026 | Lisbon, Portugal The MPE Annual Masterclass is returning in 2026, bringing together members, experts, and advocates for an engaging one-and-a-half-day educational programme in Lisbon, Portugal. This annual event is designed to strengthen the knowledge, skills, and capacity of MPE members through a mix of scientific, advocacy, and capacity-building sessions. Programme objectives The 2026 Masterclass aims to: Increase the knowledge and skills of MPE’s members Share the latest updates on myeloma and amyloidosis diagnosis, treatment and care Discuss the challenges faced by the patient community and how to address them Foster the sustainability and capacity of patient&hellip;
- [Infection and myeloma](https://www.mpeurope.org/about-myeloma/infections-and-myeloma/): Infection is a major concern for people living with myeloma, as it remains a leading cause of illness and can be life-threatening. The disease itself lowers immunity and increases probability of infection and many treatments can increase this risk too. Newer therapies, particularly those targeting immune cells such as CAR T-cell therapies and bispecific antibodies, are highly effective but carry an even greater risk of infection. For this reason, it is essential that patients and carers are aware of these risks, understand the safety profiles of different treatments and consider preventative strategies to protect against infection. Below, you will find&hellip;
- [Reducing infection risk in myeloma](https://www.mpeurope.org/what-we-do/educational-resources/qas/reducing-infection-risk-in-myeloma/): What is an infection? Causes of infection, otherwise known as pathogens, include viruses, bacteria and fungi. Infection happens when pathogens enter the body and begin to multiply, making you unwell. Infections can cause a variety of symptoms depending on where they are located. General symptoms of infection include fever, chills, pain, fatigue and feeling generally unwell. Infections are usually treated with medications called antimicrobial medications. Antibiotics, which fight bacteria, are a common example. Serious infections may require treatment in hospital. Why is reducing infection risk important in patients with myeloma? Infection is a leading cause of illness for myeloma patients,&hellip;
- [Infection risk with myeloma and myeloma treatments](https://www.mpeurope.org/what-we-do/educational-resources/qas/infection-risk-with-myeloma-and-myeloma-treatments/): Table of Contents Why is this topic important? There have been many recent advances in the management of myeloma. As new treatments have emerged, this has led to improved outcomes for myeloma patients. However, despite this promising progress, infection remains a leading cause of death for myeloma patients. This is recognised in the myeloma community, and medical organisations have produced guidelines based on evidence to support doctors and nurses, patients and patient advocates to help manage the impact of infection on myeloma patients. Myeloma itself leads to an increased risk of infection, but many myeloma treatments can also contribute to&hellip;
- [European Myeloma Day Social Media assets](https://www.mpeurope.org/european-myeloma-day/european-myeloma-day-social-media-assets/): How to show your support on social media Share our social media cards and quote cards to raise awareness about myeloma and shared decision-making, or customise your own and share your patient experience. If you have questions or need assistance, contact us at info@mpeurope.org   1. Share Ready-Made Content Download our pre-made social media cards and quote graphics below.Post them on your favorite social media platforms (Facebook, Twitter, LinkedIn, Instagram, etc&#8230;).Help spread awareness about myeloma and shared decision-making. 2. Create Your Own Content Download our editable templatesCustomize them with your own patient experience or messageShare your personal story to help&hellip;
- [Cytogenetics and risk testing in myeloma](https://www.mpeurope.org/what-we-do/educational-resources/qas/cytogenetics-and-risk-testing-in-myeloma/): What is cytogenetic testing in myeloma? Genetics is the study, at a molecular level, of how our genes are passed down from one generation to the next. A sub-branch of genetics is cytogenetics. Cytogenetics is the study of numerical and structural variations in chromosomes. Myeloma is a genetically complex blood cancer and cytogenetics play an important role in the risk stratification of disease, since the prognosis of myeloma is mainly dependent upon chromosomal changes. Cytogenetic testing is a type of genetic test performed in a laboratory and that looks at strands of DNA (deoxyribonucleic acid) called chromosomes that are housed&hellip;
- [Talquetamab](https://www.mpeurope.org/what-we-do/educational-resources/factsheets/talquetamab/): What is talquetamab (Talvey®)? Talquetamab is a bispecific antibody that received ‘orphan drug’ designation by the European Commission in 2020. An orphan drug designation is a status assigned to medicines developed for rare disease conditions that affect fewer than five patients per 10,000 inhabitants in the EU. Talquetamab has since been granted conditional marketing authorisation from the European Commission in July 2023. Conditional marketing authorisation is granted to new drugs based on less comprehensive data than normally required if the medicines address unmet medical needs and if the medicines’ benefits are thought to outweigh their risks. The researchers must provide&hellip;
- [Elranatamab](https://www.mpeurope.org/what-we-do/educational-resources/factsheets/elranatamab/): What is elranatamab (Elrexfio®)? Elranatamab is a B-cell maturation antigen (BCMA)-CD3 bispecific antibody that was granted conditional marketing authorisation from the European Commission in October 2023. Conditional marketing authorisation is granted to new drugs based on less comprehensive data than normally required if the medicines address unmet medical needs and if the medicines’ benefits are thought to outweigh their risks. Researchers must provide more comprehensive clinical data in the future to maintain approval status. Elranatamab has been conditionally approved as treatment on its own (as monotherapy) for adult patients with relapsed/refractory myeloma, who have received at least three prior lines&hellip;
- [Myeloma Awareness Month 2025](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/myeloma-awareness-month-2025/): Join us in raising awareness for myeloma! Throughout March, Myeloma Patients Europe (MPE) is dedicating this month to raising awareness, sharing patient experiences and providing expert insights on living with myeloma. This year’s theme:  living well with myeloma. What you will find on this page: ✅ Patient and carers stories: real experiences from people affected by myeloma.✅ Ask the Expert Q&amp;A with Ellen Watters, Myeloma Information Specialist, Myeloma UK. Faces of myeloma #FacesOfMyeloma: a story of hope and adaptation with Wouter After his myeloma diagnosis in 2024, Wouter faced immense challenges, from physical pain to adapting to a new way&hellip;
- [Our Strategic Goals](https://www.mpeurope.org/about-mpe/our-goals/): Since 2011, Myeloma Patients Europe (MPE) has advocated for better treatment, access and care across Europe. As the myeloma landscape and patients&#8217; needs evolve, we remain committed to delivering the best research, tools, programmes and support to tackle the challenges faced by our members and the broader patient community.  Last year, we spoke with members, patients, carers, clinicians, researchers and other stakeholders to best understand what the greatest unmet needs are in myeloma and what we can do in the next five years to have the largest impact on our community. We are excited to share our new Strategic Goals,&hellip;
- [Elections to the MPE Board of Directors 2025](https://www.mpeurope.org/mpe-general-assembly/mpe-general-assembly-2025/elections-to-the-mpe-board-of-directors-2025/): Myeloma Patients Europe’s Board welcomes you to the General Assembly 2025 candidate elections site. Our organisation has evolved since its inception in 2011, achieving a stronger organisational structure ready to take on the challenges for the coming years. By virtue of the MPE Constitution, the Board is comprised of six to nine Board members. The mandate on the Board is carried out in terms of two years. A maximum of three consecutive terms are permitted. The current Board is comprised of eight Board members:     Election 2019 Election 2021 Election 2022 Election 2023 Election 2024 Election 2025 1 Eriksson,&hellip;
- [Registration form](https://www.mpeurope.org/mpe-general-assembly/mpe-general-assembly-2025/registration-form/): The MPE General Assembly 2025 will be held virtually on 3 April from 9:00 to 12:30 CET. To register, please complete the form below before Monday 17 February 2025. Should you have any further questions, please contact the MPE HR and Operations Officer, Valentina Christodoulidou, at christodoulidou@mpeurope.org.
- [MPE General Assembly 2025](https://www.mpeurope.org/mpe-general-assembly/mpe-general-assembly-2025/): The 2025 AGM will be held online on Thursday, 3 April, 9:00 – 12:30 CET If you would like to attend the AGM 2025, please register before 17 February 2025. MPE General Assembly: member guidance and meeting operations. Proxy voting and voting rights All members may attend the General Assembly, but only Full Members have the right to vote. The person casting/holding their vote must be the one to complete the registration form. You may not register on behalf of a voter. Each full member may be represented by another member at the General Assembly, providing them with a proxy to vote&hellip;
- [MPE Masterclass 2025 | Venue and location information](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2025/mpe-masterclass-2025-venue-and-location-information/): The MPE Annual Masterclass will be held in Warsaw, Poland from Friday, 2 May to Sunday, 4 May 2025. Venue Hilton Warsaw City  Grzybowska 63, 00-844 Warszawa | Poland  Location Hilton Warsaw City is in the heart of Warsaw’s financial district, within three kilometers of Old Town Market Place, The Royal Castle in Warsaw, and the Uprising Museum. Lazienki Park, Copernicus Science Center, and Warsaw Chopin Airport can be reached in 15 minutes.
- [MPE Masterclass 2025 | Travel, expenses and reimbursement process and criteria](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2025/mpe-masterclass-2025-travel-expenses-and-reimbursement-process-and-criteria/): Travel expenses MPE provides funding for travel, accommodation and conference expenses. Expenses will be covered for two representatives from each MPE full-member organisation. For associate member groups and guests, one representative per group can attend. Kindly note that all travel bookings need to be made via the MPE travel portal &#8211; BizAway (not applicable to Industry partners). After registration to the event, each delegate will receive a link via email through which your travel booking can be made. Flight tickets not booked through the MPE travel portal will not be reimbursed by MPE. Flight tickets must be booked through the&hellip;
- [MPE Masterclass 2025 | Health and safety policy](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2025/mpe-masterclass-2025-health-and-safety-policy/): Myeloma Patients Europe (MPE) considers the health and safety of Masterclass participants a top priority and we would like to ensure that everyone involved is prepared for the trip. This is particularly important as many participants are patients and caregivers, who might have specific health and treatment considerations. Please let MPE know in advance if you have any health needs or concerns relating to your travel and stay that we can help address. Please ensure you have the necessary travel insurance for your trip, even if you have a European Health Insurance Card (EHIC), to cover any unforeseen health issues&hellip;
- [MPE Masterclass 2025 | Agenda](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2025/mpe-masterclass-2025-agenda/): 2-4 May 2025 in Warsaw, Poland. Venue Hilton Warsaw City Grzybowska 63, 00-844 Warszawa | Poland Friday, 2 May 2025 14:00-17:00 Participants check-in and registration 19:00- 22:00 Welcome dinner at hotel restaurant  Saturday, 3 May 2025 9:00- 9:15 Welcome   9:15-10:30 Plenary Session 1Myeloma and AL amyloidosis treatment updates Dr. Paweł SteckiewiczConsultant Haematologist, Deputy Head of Clinical Department of Hematology and Bone Marrow Transplantation, ŚCO   10:35-11:35 Plenary Session 2Sequencing of myeloma treatment Prof. Dominik DytfeldAssociate Professor, Department of Hematology and Bone Marrow Transplantation, Medical University of Poznań and President of the Polish Myeloma Consortium   11:35-12:00 Coffee break  &hellip;
- [MPE Masterclass 2025](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2025/): The MPE Annual Masterclass will be held in Warsaw, Poland from 2 to 4 May 2025 Once a year, MPE holds its Masterclass, a one-and-a-half-day educational programme designed to provide training to members on a wide range of different topics. The specific aims of the programme are to: Increase the knowledge and skills of MPE’s members Share the latest updates on myeloma and amyloidosis diagnosis, treatment and care Discuss the challenges faced by the patient community and how best to address these issues Help foster the sustainability and capacity of patient organisations Provide a forum to exchange successful strategies and best practices.&hellip;
- [Patient Reported Outcomes (PROs) for novel immunotherapies](https://www.mpeurope.org/what-we-do/research/patient-evidence/patient-reported-outcomes-for-novel-immunotherapies/): Project status: ongoing MPE are leading this pan-haematology project that is working to produce recommendations on what can be done to improve our understanding of blood cancer patients’ experiences of novel immunotherapies. Novel immunotherapies, such as chimeric antigen receptor T-cell therapy (CAR-T) and T-cell engaging bispecific antibodies, offer innovative ways to treat haematological cancers (i.e., myeloma, leukaemia, and lymphoma). While these novel immunotherapies offer promising results and the potential for disease-free survival, they are not without potentially serious side effects. Capturing the experiences of patients going through these treatments and the impact that they have on their lives is critical.&hellip;
- [EU HTA regulation](https://www.mpeurope.org/what-we-do/access-and-policy/eu-hta-regulation/): EU HTA regulation The recent European Union’s Regulation (EU) 2021/2282 on Health Technology Assessment (EU HTA) aims to simplify and harmonise patient access to new medicines and medical devices. Previously, after market authorization by the European Medicines Agency (EMA), pharmaceutical companies had to submit Health Technology Assessment applications in each Member State (MS) in which they wished to commercialise their product. This led to delays and inequalities in access between countries as each MS had very different ways to analyse and process these applications. The EU HTA regulation was adopted by the European Parliament and the Council of the European Union&hellip;
- [Headings](https://www.mpeurope.org/headings/): Heading H1 Heading H2 Heading H3 Heading H4 Heading H5 Heading H6 Paragraph Link to privacy policy
- [Elections to the MPE Board of Directors 2024](https://www.mpeurope.org/mpe-general-assembly/mpe-general-assembly-2024/elections-to-the-mpe-board-of-directors-2024/): Myeloma Patients Europe’s Board welcomes you to the General Assembly 2024 candidate elections site. Our organisation has evolved since its inception in 2011, achieving a stronger organisational structure ready to take on the challenges for the coming years. By virtue of the MPE Constitution, the Board is comprised of six to nine Board members. The mandate on the Board is carried out in terms of two years. A maximum of three consecutive terms are permitted. The current Board is comprised of seven Board members:     Election 2018 Election 2019 Election 2020  Election 2021 Election 2022 Election 2023 Election 2024&hellip;
- [Registration form](https://www.mpeurope.org/mpe-general-assembly/mpe-general-assembly-2024/registration-form/): The MPE General Assembly 2024 will be held virtually on 11 April from 9:00 to 12:30 CET. To register, please complete the form below before Monday 19 February 2024. Should you have any further questions, please contact the MPE HR and Operations Officer, Valentina Christodoulidou, at christodoulidou@mpeurope.org.
- [MPE General Assembly 2024](https://www.mpeurope.org/mpe-general-assembly/mpe-general-assembly-2024/): The 2024 AGM will be held online on Thursday, 11&nbsp;April, 9:00 – 12:30 CET MPE General Assembly: member guidance and meeting operations. Proxy voting and voting rights All members may attend the General Assembly, but only Full Members have the right to vote. The person casting/holding their vote must be the one to complete the registration form. You may not register on behalf of a voter. Each full member may be represented by another member at the General Assembly, providing them with a proxy to vote on their behalf. If your organisation will vote by proxy, you can indicate this&hellip;
- [MPE General Assembly](https://www.mpeurope.org/mpe-general-assembly/): Once a year MPE holds its Annual General Meeting (AGM) where MPE members get together to discuss and approve strategies and plans for the current and following year. Also, MPE members can vote and elect new members of the board when there are available seats and meet new members who join for first time the MPE family.
- [AL amyloidosis vs myeloma](https://www.mpeurope.org/what-we-do/educational-resources/qas/al-amyloidosis-vs-myeloma/): What are the similarities and differences between myeloma and AL amyloidosis? AL amyloidosis (also referred to as light chain amyloidosis) is a rare disease that, similarly to myeloma, arises due to abnormal plasma cells, which are a type of immune cell. These abnormal plasma cells reside in the bone marrow. The most important difference between the two diseases is that in myeloma, the abnormal plasma cells proliferate uncontrollably and cause problems for the bones. Meanwhile, in AL amyloidosis, the pathology is caused by the build-up of misfolded (incorrectly assembled) light chain proteins produced by the abnormal plasma cells, and which&hellip;
- [Living with AL amyloidosis](https://www.mpeurope.org/what-we-do/educational-resources/qas/living-with-al-amyloidosis/): Will I be able to work if I have AL amyloidosis? You may choose to continue working after receiving your diagnosis, however, you should keep in mind that it may be necessary to take time off work for tests and treatments, possibly involving extended hospital stays. It will also depend on the type of employment (more or less “physical”) you are in. You can discuss your diagnosis with your employer, but this is not an obligation. Many employers may be open to adopting a more flexible approach to working conditions and reducing the level of responsibility should that be required.&hellip;
- [Diagnosis, treatment and monitoring of AL amyloidosis](https://www.mpeurope.org/what-we-do/educational-resources/qas/diagnosis-treatment-and-monitoring-of-al-amyloidosis/): How is AL amyloidosis diagnosed? Diagnosing AL amyloidosis generally involves several tests, including blood tests, urine tests, imaging and biopsies. The following list outlines the most common tests that are performed to establish an AL amyloidosis diagnosis (see MPE’s AL amyloidosis guide for more details about these tests): Blood and urine testsThese can be used to determine if there are abnormal proteins produced by the bone marrow and which organs are involved in the disease and to what extent. These tests can also help determine the best treatment response once the diagnosis has been established. Examples of such tests are:&hellip;
- [CAR T-cell therapy side effects](https://www.mpeurope.org/what-we-do/educational-resources/qas/car-t-cell-therapy-side-effects/): What is CAR-T therapy? CAR T-cell therapy is a form of immunotherapy that uses the patient’s own white blood cells (specifically, T-cells) to fight myeloma. T-cells play an important role in the body’s immune response to infection or cancer. Cancer cells commonly evade or hide from our body’s immune system, making them difficult to find and destroy. In CAR T-cell therapy, some of a patient’s T-cells are extracted through a pheresis, a procedure in which blood is withdrawn, the T-cells separated and the remainders returned to the circulation. The T-cells are then equipped with a protein molecule called “chimeric antigen&hellip;
- [European Young Myeloma Patients Group](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/european-young-myeloma-patients-group/): While myeloma remains a cancer most often diagnosed in older adults, 37% of patients are younger than 65. Many resources designed to support older patients are available through national patient organisations, but there are gaps in services and information for younger patients, whose needs might differ. MPE’s European Young Myeloma Patients Group aims to address these unmet needs and provide a forum to discuss challenges and topics that are important to this patient population. Through this platform, patients under the age of 55 and patients who may not be affiliated with a national organisation will have the opportunity to share&hellip;
- [ASCERTAIN](https://www.mpeurope.org/what-we-do/research/horizon-europe/ascertain/): Back to Horizon ASCERTAIN Horizon Europe funded project ASCERTAIN (Affordability and Sustainability improvements through new pricing, Cost- Effectiveness and ReimbursemenT models to Appraise INnovative health technologies) is aiming to address the needs of patients, physicians, payers, regulators, and manufacturers to improve the affordability and accessibility of innovative health technologies (IHTs – including pharmaceuticals) in Europe. Affording many newly approved IHTs is challenging in many health systems. Erasmus University Rotterdam is leading the project consortium alongside nine consortium partners: Comenius University Bratislava, Gesundheit Österreich GmbH, University of Oslo, Association Internationale de la Mutualité (AIM), Nuromedia GmbH, European Hematology Association (EHA), Chino SRL and&hellip;
- [CERTAINTY](https://www.mpeurope.org/what-we-do/research/horizon-europe/certainty/): Back to Horizon CERTAINTY The Horizon Europe funded project CERTAINTY (a cellular immunotherapy virtual twin for personalized cancer treatment) aims to develop a “virtual twin” that could potentially improve treatment with personalised cancer immunotherapies. Virtual twins involve merging certain molecular and cellular characteristics of a person and their clinical progression data into a digital representation, which is regularly updated using a series of data variables. Based on comparative data from patients with similar characteristics, the virtual twin can then be used to simulate prognoses regarding the course of the disease or various treatment options. CERTAINTY will develop modules for a corresponding&hellip;
- [Diagnosis challenges](https://www.mpeurope.org/myeloma-and-al-amyloidosis/about-al-amyloidosis/early-diagnosis/): Research conducted by MPE on the challenges around AL amyloidosis diagnosis and the impact of a delayed diagnosis found that approximately 47% of patients waited 5 months or more to get a diagnosis and 22% waited over a year. Our research found that a delayed diagnosis can have a significant impact in several areas of a patient’s life, including on: Long-term symptoms and complications Daily activities, quality of life and emotional well-being Family members and carers Career and finances Treatment options and survival Read the full report, including additional findings and recommendations, here. A clear call to action from the&hellip;
- [Ciltacabtagene autoleucel](https://www.mpeurope.org/what-we-do/educational-resources/factsheets/ciltacabtagene-autoleucel/): What is ciltacabtagene autoleucel, cilta-cel (Carvykti®)? Ciltacabtagene autoleucel (also known as cilta-cel or Carvykti®) is a chimeric antigen receptor T-cell therapy (CAR T-cell therapy). Cilta-cel was granted “orphan drug” designation by the European Commission in 2020. An orphan drug designation is a status assigned to medicines developed for rare disease conditions that affect fewer than five patients per 10,000 inhabitants in the EU. The EMA authorised cilta-cel in May 2022 for treating adults with multiple myeloma whose cancer has returned (relapsed) or has not responded to treatment (refractory). Cilta-cel is used when patients’ disease worsens despite receiving at least three&hellip;
- [Melphalan flufenamide](https://www.mpeurope.org/what-we-do/educational-resources/factsheets/melphalan-flufenamide/): What is melphalan flufenamide (melflufen, Pepaxti®)? Melphalan flufenamide (also known as melflufen, trade names Pepaxti®, Pepaxto®) is derived from the chemotherapeutic agent melphalan manufactured by Oncopeptides AB. Melflufen is indicated for treating adult myeloma patients with dexamethasone. Patients who are given melflufen have received at least three prior lines of therapies and have myeloma refractory to at least one proteasome inhibitor, one immunomodulatory agent and one anti-CD38 monoclonal antibody. Also, patients being administered melflufen have progressed on or after their previous treatment line. Patients who have received an autologous stem cell transplant should be three years or more from transplantation1.&hellip;
- [Teclistamab](https://www.mpeurope.org/what-we-do/educational-resources/factsheets/teclistamab/): What is teclistamab (Tecvayli®)? Teclistamab is a laboratory-made, bispecific monoclonal antibody (BsAb). It was approved by the European Medicines Agency (EMA) in August 2022 and is indicated for treating adult multiple myeloma patients whose disease has worsened despite receiving at least three prior lines of therapies, including a proteasome inhibitor, an immunomodulatory agent and an anti-CD38 monoclonal antibody.The EMA granted teclistamab conditional marketing authorisation in 2022. Conditional marketing authorisations allow medications to be approved with less comprehensive data than is normally required because the medicines will address areas of unmet medical needs, and the expected benefits appear to outweigh the&hellip;
- [Liability disclaimer](https://www.mpeurope.org/liability-disclaimer/): Your participation in all Myeloma Patients Europe (MPE)-related events (Masterclass, Advocate Development Programme or any other event) is subject to the following terms and conditions: Assumption of risk: participation in MPE events is entirely voluntary and at your own risk. MPE and its affiliates shall not be held liable for any incidents or contingencies that may occur during your participation, including those while travelling to, from, or during the event. Liability disclaimer: MPE and its affiliates disclaim all responsibility for any injuries, losses or damages suffered by participants or third parties during MPE events. Program accuracy: while every effort is&hellip;
- [Bristol Myers Squibb (BMS) CAR-T interview](https://www.mpeurope.org/what-we-do/research/horizon-europe/caramba/bristol-myers-squibb-bms-car-t-interview/): This interview was conducted in November-December 2022 and published in June 2023. Myeloma Patients Europe (MPE) has conducted a series of four written interviews on CAR-T manufacturing to better understand manufacturing processes and challenges of various myeloma CAR-T therapies. Four different stakeholders have answered our questions, including two pharmaceutical companies, which each have a myeloma CAR-T product approved by the European Medicines Agency, and two academic teams which have developed myeloma CAR-T products currently under clinical investigation. In this interview, we will learn about the manufacturing process at Bristol Myers Squibb (BMS). The Bristol-Myers Squibb (BMS) Company is an American&hellip;
- [Hadassah Hebrew University Medical Centre CAR-T interview](https://www.mpeurope.org/what-we-do/research/horizon-europe/caramba/103059-2/): This interview was conducted in November-December 2022 and published in June 2023. Myeloma Patients Europe (MPE) has conducted a series of four written interviews on CAR-T manufacturing to better understand manufacturing processes and challenges of various myeloma CAR-T therapies. Four different stakeholders have answered our questions, including two pharmaceutical companies, which each have a myeloma CAR-T product approved in the European Union, and two academic teams which have developed myeloma CAR-T products currently under clinical investigation. In this interview, we will learn about the manufacturing process at Hadassah Hebrew University Medical Centre, Jerusalem, Israel. Dr. Stepensky’s team conducts research and&hellip;
- [Interview of Prof. Dr. Bönig, Goethe University, on their CAR T-cell manufacturing process](https://www.mpeurope.org/what-we-do/research/horizon-europe/caramba/interview-of-prof-dr-bonig-goethe-university-on-their-car-t-cell-manufacturing-process/): This interview was conducted in November-December 2022 and published in June 2023. Myeloma Patients Europe (MPE) has conducted a series of four written interviews on CAR-T manufacturing to better understand manufacturing processes and challenges of various myeloma CAR-T therapies. Four different stakeholders have answered our questions, including two pharmaceutical companies, which each have a myeloma CAR-T product approved in the European Union, and two academic teams which have developed myeloma CAR-T products currently under clinical investigation. In this interview, we will learn about the manufacturing process of the CARAMBA product. Dr. Halvard Bönig is the Head of Manufacturing and Qualified&hellip;
- [Interview of Janssen Pharmaceuticals on their CAR T-cell manufacturing process](https://www.mpeurope.org/what-we-do/research/horizon-europe/caramba/interview-of-janssen-pharmaceuticals-on-their-car-t-cell-manufacturing-process/): This interview was conducted in November-December 2022 and published in June 2023. Myeloma Patients Europe (MPE) has conducted a series of four written interviews on CAR-T manufacturing to better understand the manufacturing processes and challenges of various myeloma CAR-T therapies. Four stakeholders have answered our questions, including two pharmaceutical companies, each with a myeloma CAR-T product approved in the European Union, and two academic teams which have developed myeloma CAR-T products currently under clinical investigation. In this interview, we will learn about the manufacturing process at Janssen Pharmaceuticals. Janssen is a pharmaceutical company owned by Johnson &amp; Johnson. Janssen received the&hellip;
- [MPE General Assembly 2023](https://www.mpeurope.org/mpe-general-assembly/mpe-general-assembly-2023/): General guidance and information Thursday,&nbsp;23&nbsp;March, 9:00 am – 12:30 CET MPE General Assembly: member guidance and meeting operations. Proxy voting and voting rights All members may attend the General Assembly, but only Full Members have the right to vote. The person casting/holding their vote must be the one to completethe registration form. You may not register on behalf of a voter. Each full member may be represented by another member at the GeneralAssembly, providing them with a proxy to vote on their behalf. If your organisation will vote by proxy, you can indicate this in the&nbsp;registration form. Please note that&hellip;
- [Patient Focus Group on myeloma and AL amyloidosis diagnosis](https://www.mpeurope.org/european-myeloma-day/patient-focus-group-on-myeloma-and-al-amyloidosis-diagnosis/): Thank you for registering for MPE’s focus group on myeloma and ALamyloidosis diagnosis on 14.06.2022 from 10:00 to 12:00 CET. Yourregistration is confirmed.  MPE will be in touch shortly with the Zoom link for your Focus Group.If you have any questions in the meantime, please contact LindaChristopher at christopher@mpeurope.org  Thanks in advance for your participation!
- [Videos and webinars on capacity building and advocacy](https://www.mpeurope.org/what-we-do/access-and-policy/educational-resources-on-access-and-policy/videos-and-webinars-on-capacity-building-and-advocacy/)
- [MPE Masterclass 2022 | Registration form](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2022/mpe-masterclass-2022-registration-form/)
- [MPE Masterclass 2022 | Venue and location information](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2022/mpe-masterclass-2022-venue-and-location-information/): The MPE Annual Masterclass will be held in Amsterdam, Netherlands, from Friday, July 1 to Sunday, July 3, 2022. Venue Movenpick Hotel Amsterdam City Centre Piet Heinkade 11 | 1019 BR | Amsterdam | Netherlands Location &nbsp;Mövenpick Hotel can easily be reached via multiple forms of transport. Amsterdam Central Station (Amsterdam Centraal) is within walking distance from the hotel (approximately 10 minutes). The direct train from Schiphol Amsterdam Airport (AMS) to Central Station takes 20 minutes and a taxi to the hotel from AMS is around 30 minutes. The “Muziekgebouw/Bimhuis” tram stop is in front of the hotel, which is&hellip;
- [MPE Masterclass 2022 | Travel, expenses and reimbursement process and criteria](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2022/mpe-masterclass-2022-travel-expenses-and-reimbursement-process-and-criteria/): Travel Expense Do not book your travel until MPE has confirmed that we will hold the Masterclass in person. We will communicate our decision by the end of April 2022. If you book before MPE has confirmed that the event will be held in person, MPE is not liable to reimburse you for these costs or any cancellation fees. MPE provides funding for travel, accommodation, and conference expenses. Expenses will be covered for two representatives from each MPE full member organisation. For associate member groups and invited guests, one representative per group can attend. Travel is booked by each delegate&hellip;
- [MPE Masterclass 2022 | Agenda](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2022/mpe-masterclass-2022-agenda/): Friday, 28 October &nbsp; 15:30-16:00 Welcome and introduction Speaker: Dr Sarper Diler, President of MPE 16:00-17:005 Myeloma and amyloidosis 101 Speaker: Dr Joaquin Martínez, Hematology Department, Head of Division, Hospital 12 de Octubre, Madrid, Spain 17:00-17:10 Evidence based advocacy: implementing the MPE Atlas Speaker: Ananda Plate, CEO of MPE 17:10-17:25 Case study Speaker: Eric Low, Vicepresident of MPE 17:25-17:40 Atlas Coaching Programme Speaker: Marta Ballester, Avedis Donabedian Research Foundation 17:40-18:00 Atlas Coaching Programme panel Speakers: Mait Raava (Estonian Myeloma Society, Estonia), Lucica Nitu (SOS Mielom, Romania), Milena Remic (L&amp;L, Slovenia) 18:00-18:15 Coffee break 18:15-19:15 Update on MPE programmes 2017 (optional)&hellip;
- [Relevant Documents](https://www.mpeurope.org/relevant-documents/): Relevant documents In this section you can find and download all relevant documents related to MPE General documentation &nbsp; Reimbursement form &nbsp; Membership application form &nbsp; MPE Constitution (English version) Minutes &nbsp; 2017 Annual General Meeting &nbsp; 2016 Annual General Meeting &nbsp; 2015 Annual General Meeting &nbsp; 2014 Annual General Meeting &nbsp; 2013 Annual General Meeting Activity reports &nbsp; Activity Report 2021 &nbsp; Activity Report 2020 &nbsp; Activity Report 2019 &nbsp; Activity Report 2018 Financial reports &nbsp; Financial Report 2020 &nbsp; Financial Report 2019 &nbsp; Financial Report 2018 &nbsp;
- [SARS-CoV-2 (COVID-19) Vaccination for Myeloma Patients](https://www.mpeurope.org/what-we-do/educational-resources/qas/sars-cov-2-covid-19-vaccination-for-myeloma-patients/): The SARS-CoV-2 (COVID-19) pandemic has raised a lot of questions, especially around vaccination. We hope to answer some of the most frequently asked questions about the current approved vaccines in Europe. This is not intended to be medical advice and, as every individual case differs, we recommend you consult your haematologist/clinician if you have further questions or concerns. Also, as the situation surrounding COVID-19 and vaccination is evolving rapidly, MPE will attempt to update this document when new information emerges. This Q&amp;A provides information on the following: The approved vaccines in Europe as of March 2021. How the approved vaccines&hellip;
- [Felmérés mielómás betegek tájékoztatási igényeiről](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/felmeres-mielomas-betegek-tajekoztatasi-igenyeirol/): Az Amgennel karöltve a mielómás betegek európai szervezete, a Myeloma Patients Europe (MPE) a mielómás betegek érdekcsoportjainak és szövetségeinek ernyőszervezeteként felmérést készít európai mielómás betegek körében a tájékoztatási igényeik megértése céljából. Ha Ön Magyarország területén élő mielómás beteg, aki korábban legalább egyszer kezelést kapott vagy jelenleg részesül először kezelésben, az MPE szívesen venné, ha időt szánna a felméréshez szükséges kérdőív kitöltésére. A kérdőívet ezen a linken keresztül érheti el: https://www.medicalradar.com/ims/ws/benchmark.php?id=139&amp;code=ws5d0c9396160402.62121443 A kérdőív kidolgozásában közreműködött az Amgen gyógyszergyártó vállalat. A kérdőívben a betegeknek egy sor kérdésre kell válaszolniuk annak érdekében, hogy jobban megismerjék a mielómás betegek tájékoztatási igényeit és preferenciáit, különös&hellip;
- [Enquête sur les besoins d’informations des patients atteints de myélome](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/enquete-sur-les-besoins-dinformations-des-patients-atteints-de-myelome/): Myeloma Patients Europe (MPE), une organisation faîtière de groupes et associations de patients atteints de myélome, mène une enquête en collaboration avec Amgen chez les patients atteints de myélome en Europe, afin de comprendre leurs besoins d’informations. Si vous êtes un patient atteint de myélome en/à/au/aux France, qui a reçu au moins un traitement antérieur ou qui reçoit actuellement un premier traitement, MPE vous serait très reconnaissant si vous preniez le temps de répondre à l’enquête. Vous trouverez le lien menant à l’enquête ici. L’enquête a été développée en collaboration avec la société pharmaceutique Amgen. Elle comprend une série de&hellip;
- [Ankieta dotycząca potrzeb informacyjnych pacjentów ze szpiczakiem](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/ankieta-dotyczaca-potrzeb-informacyjnych-pacjentow-ze-szpiczakiem/): Myeloma Patients Europe (MPE), organizacja parasolowa skupiająca grupy i stowarzyszenia pacjentów ze szpiczakiem, wraz z firmą Amgen prowadzi ankietę dla pacjentów ze szpiczakiem w Europie, aby zrozumieć ich potrzeby informacyjne. Jeśli jest Pan/Pani pacjentem ze szpiczakiem, mieszkającym który otrzymał co najmniej jedno wcześniejsze leczenie lub obecnie otrzymuje swoje pierwsze leczenie, organizacja MPE byłaby bardzo wdzięczna za poświęcenie czasu na wypełnienie tej ankiety. Link do tej ankiety można znaleźć tutaj. Ankieta została opracowana we współpracy z firmą farmaceutyczną Amgen. Pytania zadane pacjentom ze szpiczakiem pozwolą lepiej zrozumieć ich potrzeby informacyjne i preferencje, ze szczególnym uwzględnieniem rodzajów informacji szczególnie przydatnych pacjentom przy&hellip;
- [Sondaggio sulle esigenze informative dei pazienti affetti da mieloma](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/sondaggio-sulle-esigenze-informative-dei-pazienti-affetti-da-mieloma/): Myeloma Patients Europe (MPE), un’organizzazione ombrello che riunisce gruppi e associazioni di pazienti affetti da mieloma, sta conducendo un sondaggio in collaborazione con Amgen per i pazienti europei affetti da mieloma al fine di comprendere le loro esigenze informative. Se Lei è un/a paziente affetto/a da mieloma residente in Svizzera che ha ricevuto almeno un trattamento in precedenza o che sta attualmente ricevendo il Suo primo trattamento, MPE Le sarebbe molto grata se dedicasse un po’ del Suo tempo a compilare il sondaggio. Il sondaggio è stato sviluppato in collaborazione con l’azienda farmaceutica Amgen. Il sondaggio pone ai pazienti una&hellip;
- [Enquête naar de informatiebehoeften van myeloompatiënten](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/enquete-naar-de-informatiebehoeften-van-myeloompatienten/): Myeloma Patients Europe (MPE), een overkoepelende organisatie van patiëntengroepen en -verenigingen voor patiënten met multipel myeloom, voert in samenwerking met Amgen een enquête uit bij Europese myeloompatiënten om inzicht te verkrijgen in hun informatiebehoeften. Bent u een myeloompatiënt die in Nederland woont en ten minste één voorafgaande behandeling heeft gekregen of krijgt u momenteel uw eerste behandeling, dan zou MPE u zeer dankbaar zijn als u de tijd zou willen nemen om de enquête in te vullen. U kunt de link naar de enquête hier vinden De enquête is ontwikkeld in samenwerking met het farmaceutische bedrijf Amgen. De enquête stelt&hellip;
- [Undersökning om myelompatienters behov av information](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/102271-2/): Myeloma Patients Europe (MPE), en paraplyorganisation för myelompatientgrupper och -föreningar, utför en undersökning i samarbete med Amgen för europeiska myelompatienter för att förstå deras behov av information. Om du är en myelompatient som bor i Sverige, som tidigare har fått minst en behandling eller för närvarande får din första behandling, skulle MPE vara mycket tacksam om du tar dig tid att fylla i enkäten. Du finner länken till undersökningen här. Undersökningen har utvecklats i samarbete med läkemedelsföretaget Amgen. I undersökningen ställs ett antal frågor till patienterna för att bättre förstå myelompatientens behov av och preferenser för information. Den är speciellt&hellip;
- [Chestionar privind nevoile de informare ale pacienților cu mielom](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/chestionar-privind-nevoile-de-informare-ale-pacientilor-cu-mielom/): Myeloma Patients Europe (MPE), o organizație-umbrelă a grupurilor și asociațiilor pacienților cu mielom, administrează un chestionar în colaborare cu Amgen pentru pacienții europeni cu mielom, pentru a le înțelege nevoile de informare. Dacă suferiți de mielom și locuiți în România, și ați urmat cel puțin un tratament anterior sau urmați în prezent primul dvs. tratament, MPE v-ar fi foarte recunoscătoare dacă v-ați face timp să răspundeți la chestionar. Puteți găsi adresa chestionarului aici. Chestionarul a fost elaborat în colaborare cu compania farmaceutică Amgen. Chestionarul adresează pacienților o serie de întrebări, pentru a înțelege mai bine nevoile și preferințele pacienților cu&hellip;
- [Kyselytutkimus myeloomapotilaiden tietotarpeista](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/kyselytutkimus-myeloomapotilaiden-tietotarpeista/): Myeloomapotilaiden ryhmien ja yhdistysten eurooppalainen kattojärjestö Myeloma Patients Europe (MPE) ja Amgen toteuttavat eurooppalaisille myeloomapotilaille suunnatun kyselytutkimuksen, jonka tarkoituksena on parantaa ymmärrystä potilaiden tietotarpeista. Jos olet Suomi asuva myeloomapotilas, joka on saanut vähintään kertaalleen hoitoa tai jonka ensimmäinen hoitokerta on vielä kesken, MPE arvostaisi suuresti, jos vastaisit kyselyyn. Linkki kyselyyn on täällä. Kyselytutkimus on suunniteltu yhdessä lääkeyhtiö Amgenin kanssa. Kyselyssä potilaille esitetään erilaisia kysymyksiä, joilla tähdätään myeloomapotilaiden tietotarpeiden ja mieltymysten kartoittamiseen. Kysymyksissä keskitytään erityisesti tietotyyppeihin, joita potilaat pitävät tärkeinä tietoon perustuvien hoitopäätösten kannalta. Lisäksi tutkimuksella pyritään hahmottamaan potilaan osallistumista edellisen hoitopäätöksen tekemiseen ja päätökseen vaikuttaneita tekijöitä tietojen yhteyttä hoitopäätökseen liittyvään&hellip;
- [Umfrage zum Informationsbedarf von Myelom-Patienten](https://www.mpeurope.org/survey-on-myeloma-patient-information-needs/umfrage-zum-informationsbedarf-von-myelom-patienten/): Myeloma Patients Europe (MPE), ein Dachverband von Myelom-Patientengruppen und -Verbänden, führt in Zusammenarbeit mit Amgen eine Umfrage zur Bestimmung des Informationsbedarfs von europäischen Myelom-Patienten durch. Wenn Sie ein Myelom-Patient sind und bislang mindestens eine Behandlung erhalten haben bzw. derzeit Ihre Erstbehandlung erhalten, wäre Ihnen MPE sehr dankbar, wenn Sie sich einen Moment Zeit nehmen würden, um diese Umfrage auszufüllen. Die Umfrage wurde in Zusammenarbeit mit dem Pharmaunternehmen Amgen erstellt. Bei der Umfrage wird den Patienten eine Reihe von Fragen gestellt, um mehr über die Bedürfnisse und Prioritäten von Myelom-Patienten in Hinblick auf Informationen zu erfahren, die insbesondere bei der Entscheidung&hellip;
- [Central and Eastern European (CEE) Workgroup on Access](https://www.mpeurope.org/what-we-do/access-and-policy/central-and-eastern-european-cee-workgroup-on-access/): &lt;img decoding=&#8221;async&#8221; src=&#8221;https://www.mpeurope.org/wp-content/uploads/2019/05/CEE-workgroup-410&#215;1024.png&#8221; alt=&#8221;&#8221; width=&#8221;289&#8243; height=&#8221;722&#8243; srcset=&#8221;https://www.mpeurope.org/wp-content/uploads/2019/05/CEE-workgroup-410&#215;1024.png 410w, https://www.mpeurope.org/wp-content/uploads/2019/05/CEE-workgroup-120&#215;300.png 120w, https://www.mpeurope.org/wp-content/uploads/2019/05/CEE-workgroup-768&#215;1920.png 768w, https://www.mpeurope.org/wp-content/uploads/2019/05/CEE-workgroup.png 800w&#8221; sizes=&#8221;(max-width: 289px) 100vw, 289px&#8221;/&gt; &nbsp; Myeloma Patients Europe (MPE) has launched a Central and Eastern Europe (CEE) Workgroup on Access. The CEE Workgroup forms part of the Myeloma Access Atlas, the MPE programme designed to assist members in identifying and developing strategies to overcome the national barriers to accessing high standards of diagnosis, treatment and care. The Workgroup is steered by MPE, but the agenda is driven by members in CEE countries who wish to participate. The Workgroup is chaired by MPE board members, Kristina Modic,&hellip;
- [F&A (Fragen und Antworten) zu Horizont 2020 MMpredict](https://www.mpeurope.org/what-we-do/publications/fa-fragen-und-antworten-zu-horizont-2020-mmpredict/): Myeloma Patients Europe (MPE) beteiligt sich im Rahmen der Horizont 2020 Initiative der EU an einem Projekt namens MMPredict. Ziel des Projektkonsortiums ist die Entwicklung eines Tools für personalisierte Medizin, welches in der Lage ist, die effektivste Behandlungsstrategie für Myelom-Patienten zu prognostizieren. Zur Unterstützung dieses Projektes führt MPE eine Umfrage mit Myelom-Patienten aus ganz Europa durch. Ziel der Umfrage ist es, mehr über die Lebensqualität der Patienten sowie über den Einfluss von therapeutischen Nebenwirkungen auf die Lebensqualität zu erfahren. Die Umfrage erfasst weiterhin die Haltung der Patienten gegenüber genetischen Testverfahren und Verfahren der Risikoabschätzung (z.B. um zu verstehen, ob ein&hellip;
- [What causes myeloma?](https://www.mpeurope.org/about-myeloma/what-causes-myeloma/):    For most people with myeloma, the exact causes are not clear but are thought to be a combination of genetic and environmental factors. Some of the factors that may be implicated are viruses, radiation, exposure to specific chemicals and a generally weakened immune system.   Myeloma is slightly more likely to occur if a family member also has it, which suggests there may be an inherited susceptibility. However, other environmental factors must also be present before myeloma will develop. Although the exact cause of myeloma is not known, quite a lot is known about the factors which are linked&hellip;
- [What are the symptoms?](https://www.mpeurope.org/about-myeloma/what-are-the-symptoms/): &nbsp; &nbsp;&nbsp; Myeloma is a complex cancer with both physical and emotional effects. Not everyone has all of the symptoms, but the following are the most common physical effects. &nbsp;Pain: Most myeloma patients will unfortunately suffer a dull, aching pain at some stage due to the abnormal activity in the bone marrow. Myeloma bone disease most often affects the middle or lower back, the rib cage or the hips, and movement can be painful. Anaemia: The reduction in the number of red blood cells, which carry oxygen throughout the body, results in anaemia. This can cause fatigue, weakness or shortage&hellip;
- [Preparing for medical check-ups](https://www.mpeurope.org/about-myeloma/preparing-for-medical-check-ups/): &nbsp; &nbsp; You will have regular check-ups from the time of your diagnosis – the frequency may vary in different countries of Europe but they are likely to be every few weeks and will be set by your physician. Because myeloma is a complicated condition and you may want to ask about many aspects of your symptoms, feelings and treatments, it is a good idea to think carefully about it before your check-ups, so you can make sure to cover everything. If you leave a notebook somewhere handy in your house or carry it with you, you can make a&hellip;
- [Multiple Myeloma](https://www.mpeurope.org/about-myeloma/multiple-myeloma/): Although myeloma is the second most common form of blood cancer, it only represents 1% of cancers. Many people have never heard of it, so being diagnosed with myeloma can be quite frightening. In some ways, it can be more worrying than being told you have another type of cancer if you have not heard the name before. You will have a lot of questions, and you will learn a lot about myeloma in the weeks and months to come. It will take time for it to begin to make sense. This guide gives the answers to most of the&hellip;
- [Incidence of myeloma](https://www.mpeurope.org/about-myeloma/incidence-of-myeloma/): &nbsp; Myeloma is rare, accounting for 1% of all cancers and 15% of blood cancers, but it is the second most common blood cancer after non-Hodgkin’s lymphoma. In Europe about 40,000 people were diagnosed with myeloma in 2015, and this number is predicted to increase to almost 46,000 by 2025. Myeloma can affect adults of any age, but it is much more common in people aged over 65 years, and in men rather than women.
- [MPE Masterclass 2024 | Health and safety policy](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2024/mpe-masterclass-2024-health-and-safety-policy/): Myeloma Patients Europe (MPE) considers the health and safety of Masterclass participants a top priority and we would like to ensure that everyone involved is prepared for the trip. This is particularly important as many participants are patients and caregivers, who might have specific health and treatment considerations. Please let MPE know in advance if you have any health needs or concerns relating to your travel and stay that we can help address. Please ensure you have the necessary travel insurance for your trip, even if you have a European Health Insurance Card (EHIC), to cover any unforeseen health issues&hellip;
- [MPE Masterclass 2024 | Venue and location information](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2024/mpe-masterclass-2024-venue-and-location-information/): The MPE Annual Masterclass will be held in Madrid, Spain, from Friday, May 03 to Sunday, May 05, 2024. Venue Meliá Avenida América (not to be confused with the Avenida de América area) Calle de Juan Ignacio Luca de Tena | 36 Madrid, Spain  Location Meliá Avenida América is located 6 km from Adolfo Suárez Madrid-Barajas Airport and 9 km from Madrid centre. The hotel is perfectly connected to the beautiful centre of Madrid. The hotel also provides free airport transfers from 7:00 am to 11:30 pm (subject to availability).
- [MPE Masterclass 2024 | Travel, expenses and reimbursement process and criteria](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2024/travel-expenses-and-reimbursement-process-and-criteria/): Travel Expenses MPE provides funding for travel, accommodation and conference expenses. Expenses will be covered for two representatives from each MPE full member organisation. For associate member groups and guests, one representative per group can attend. Travel is booked by each delegate and will be reimbursed by MPE up to max. 350 EUR per delegate after the meeting. Flight tickets must be booked by each delegate by the 28th of February 2024, and the details must be sent to agm@mpeurope.org by the 1st of March 2024. MPE will confirm your room booking only after receiving the flight booking confirmation from the delegates. No&hellip;
- [MPE Masterclass 2024 | Agenda](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2024/mpe-masterclass-2024-agenda/): Friday, 3 May 2024 14:00 – 17:00 Participants check-in and registration 19:00 – 22:00 Welcome dinner at the hotel restaurant Saturday, 4 May 2024 09:00 – 09:15 Welcome Lise-lott Eriksson, President of MPE   09:15 – 10:30 Plenary session 1 &#8211;  Myeloma and AL amyloidosis treatment updates Dr Albert Oriol, Head of the Clinical Research Unit, Institut Català d&#8217;Oncologia (ICO)   10:35 – 11:35 Plenary session 2 &#8211; Side effects and management of myeloma and AL amyloidosis treatment Dr Charlotte Pawlyn, Haematologist and Clinician Scientist, Cancer Research UK   11:35 – 12.00 Coffee break    12:00 – 13:15 Plenary session&hellip;
- [MPE Masterclass 2024](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/mpe-masterclass-2024/): The MPE Annual Masterclass will be held in Madrid, Spain, from 3rd to 5th May 2024 Once a year, MPE holds its Masterclass, a one-and-a-half-day educational programme designed to provide training to members on a wide range of different topics.   The specific aims of the programme are to: Increase the knowledge and skills of MPE’s members Share the latest updates on myeloma and amyloidosis diagnosis, treatment and care Discuss the challenges faced by the patient community and how best to address these issues Help foster the sustainability and capacity of patient organisations Provide a forum to exchange successful strategies and&hellip;
- [Інформація для українських пацієнтів, які потребують лікування в Румунії](https://www.mpeurope.org/what-we-do/mpe-support-for-ukrainian-patients-during-this-ongoing-crisis/%d1%96%d0%bd%d1%84%d0%be%d1%80%d0%bc%d0%b0%d1%86%d1%96%d1%8f-%d0%b4%d0%bb%d1%8f-%d1%83%d0%ba%d1%80%d0%b0%d1%97%d0%bd%d1%81%d1%8c%d0%ba%d0%b8%d1%85-%d0%bf%d0%b0%d1%86%d1%96%d1%94%d0%bd%d1%82%d1%96-2/): Ця інформація призначена для українських пацієнтів із мієломою та AL-амілоїдозом, які потребують медичної допомоги в Румунії. Для її укладання було використано загальнодоступну інформацію, зібрану в ході кабінетного аналізу документів. Вона не переглядалася та не перевірялася органами охорони здоров’я Румунії. Якщо вам необхідна допомога або у вас є конкретне запитання щодо отримання лікування й догляду в Румунії, надішліть електронного листа на адресу info@mpeurope.org. Ми приймаємо та відповідаємо на листи, написані українською мовою.   Чи буде лікування мієломи та/або AL-амілоїдозу покриватися в Румунії? Міністерство охорони здоров’я Румунії та Національний медичний страховий дім опублікували заяви, з гідно з якими громадяни України матимуть доступ&hellip;
- [Інформація для українських пацієнтів, які потребують лікування в Польщі](https://www.mpeurope.org/what-we-do/mpe-support-for-ukrainian-patients-during-this-ongoing-crisis/%d1%96%d0%bd%d1%84%d0%be%d1%80%d0%bc%d0%b0%d1%86%d1%96%d1%8f-%d0%b4%d0%bb%d1%8f-%d1%83%d0%ba%d1%80%d0%b0%d1%97%d0%bd%d1%81%d1%8c%d0%ba%d0%b8%d1%85-%d0%bf%d0%b0%d1%86%d1%96%d1%94%d0%bd%d1%82%d1%96/): Це збірка інформація для українських хворих на мієлому та амілоїдоз AL, які потребують доступу до медичної допомоги в Польщі. Цю збірку було написано з використанням загальнодоступної інформації. Польські органи охорони здоров’я не розглядали та не перевіряли її. Якщо вам потрібна допомога або виникли конкретні запитання щодо лікування та догляду в Польщі, напишіть на адресу info@mpeurope.org Ми приймаємо та відповідаємо на електронні листи, написані українською мовою.   Чи буде покриватися лікування мієломи та/або амілоїдозу AL у Польщі? Уряд Польщі погодився покривати всі медичні потреби українських біженців через Національний фонд охорони здоров’я (NFZ – Narodowy Fundusz Zdrowia). Сюди входить надання лікування та&hellip;
- [Information for Ukrainian patients requiring treatment in Romania](https://www.mpeurope.org/what-we-do/mpe-support-for-ukrainian-patients-during-this-ongoing-crisis/information-for-ukrainian-patients-requiring-treatment-in-romania/): This is information for Ukrainian myeloma and AL amyloidosis patients who need access to healthcare in Romania. It has been written using publicly available information gathered from desk-based research. It has not been reviewed or verified by Romanian health authorities. If you need assistance or have a specific question about receiving treatment and care in Romania, please email info@mpeurope.org. We will accept and answer emails written in Ukrainian.   Will treatment for myeloma and/or AL amyloidosis be covered in Romania? The Romanian Ministry of Health and National Health Insurance House have both issued statements confirming that Ukrainian citizens will have&hellip;
- [Information for Ukrainian patients requiring treatment in Poland](https://www.mpeurope.org/what-we-do/mpe-support-for-ukrainian-patients-during-this-ongoing-crisis/information-for-ukrainian-patients-requiring-treatment-in-poland/): This is information for Ukrainian myeloma and AL amyloidosis patients who need access to healthcare in Poland. It has been written using publicly available information gathered from desk-based research. It has not been reviewed or verified by Polish health authorities. If you need assistance or have a specific question about receiving treatment and care in Poland, please email info@mpeurope.org. We will accept and answer emails written in Ukrainian. Will treatment for myeloma and/or AL amyloidosis be covered in Poland? The Government in Poland has agreed to cover all medical needs of Ukrainian refugees through the National Health Fund (NFZ –&hellip;
- [MPE support for Ukrainian patients during this ongoing crisis](https://www.mpeurope.org/what-we-do/mpe-support-for-ukrainian-patients-during-this-ongoing-crisis/): Myeloma Patients Europe (MPE) is supporting Ukrainian patients during this ongoing crisis. If you are a myeloma or AL amyloidosis patient in Ukraine, or a refugee in another European country, in need of information on how to access treatment and support, please contact us at info@mpeurope.org. Myeloma Patients Europe is a collaborative association of patient groups striving for better treatments and care for myeloma and AL amyloidosis patients in Europe. We strongly believe that all patients should have access to the best treatment and care, no matter where they live. Read here the full MPE statement on the situation in Ukraine. MPE is&hellip;
- [CEE Access Report - Appendices](https://www.mpeurope.org/cee-access-report-appendices/): 6. APPENDICES 6.1. CEE MYELOMA TRIAL ANALYTICS: METHODOLOGY 6.2. CEE MYELOMA TRIAL ANALYTICS: RESULT DETAILS 6.3. LITERATURE REVIEW METHODOLOGY 6.4. ADDITIONAL REFERENCES 6.5. CEE STAKEHOLDER INTERVIEW METHODOLOGY
- [Atlas case studies and testaments](https://www.mpeurope.org/atlas-case-studies-and-testaments/): Barbara Leonardi, Fundacja Carita, Poland “We really welcome the launch of the Myeloma Access Atlas. Myeloma Patients Europe has supported Fundacja Carita twice via the Atlas Programme by writing to the Polish Health Ministry to support the approval or reinstatement of myeloma drugs for national funding. By highlighting the importance of the drugs to patients alongside information on comparative access in Europe, it really supported our case. Through collaborative and strong action, we were able to improve access for Polish myeloma patients.”  Mirjana Babamova, HEMA, Macedonia “I have been involved with MPE through a range of programmes, most importantly joining&hellip;
- [Addressing access barriers to myeloma clinical trials in Central Eastern Europe](https://www.mpeurope.org/about-myeloma/addressing-access-barriers-to-myeloma-clinical-trials-in-central-eastern-europe/): Myeloma Patients Europe (MPE) launched a first-of-its-kind advocacy report on Addressing access barriers to myeloma clinical trials in Central and Eastern Europe (CEE). The report, led by the MPE CEE Workgroup on Access, found huge inequalities for patients, confirming reports from MPE CEE members about a lack of clinical trials opening in the region and difficulties in patient participation. Biba Dodeva, MPE Board Member and Chair of the MPE CEE Workgroup on Access commented: “This is an important report which for the first time shines a light on the differences in myeloma trial access between countries and explores potential reasons&hellip;
- [Fokusgruppendiskussionen zur CAR-T-Behandlung](https://www.mpeurope.org/car-t-treatment-focus-group-discussions/fokusgruppendiskussionen-zur-car-t-behandlung/): Horizon 2020 CARAMBA ist ein Projektkonsortium zur Erforschung einer innovativen Immuntherapie zur Behandlung des Multiplen Myeloms, der sogenannten „Chimeric Antigen Receptor T-cell therapy“ (CAR-T). Durch die strategische Zusammenarbeit mit einer Vielzahl von Interessengruppen, darunter Myeloma Patients Europe (MPE), will das Konsortium den reibungslosen Übergang der CAR-T-Behandlung von der Forschung hin zur praktischen Anwendung bei Patienten mit Multiplem Myelom sicherstellen.   CARAMBA beschäftigt sich insbesondere mit dem Targeting der CAR-T-Behandlung auf ein bestimmtes Protein namens SLAMF7, das auf der Oberfläche von Myelomzellen vorkommt. Die Sicherheit und Wirksamkeit von SLAMF7-spezifischen CAR-T-Zellen zur Behandlung von Patienten mit Multiplem Myelom wird in einer kleinen klinischen Studie der&hellip;
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- [Videos and webinars on access and policy](https://www.mpeurope.org/what-we-do/access-and-policy/educational-resources-on-access-and-policy/videos-and-webinars-on-access-and-policy/): Find below videos and webinars on access and policy developed mainly for patient organisations and advocates. Click here to check full educational resources materials for all areas of work: myeloma and AL amyloidosis, access, patient evidence and capacity building and advocacy.
- [Q&As on access and policy](https://www.mpeurope.org/what-we-do/access-and-policy/educational-resources-on-access-and-policy/qas-on-access-and-policy/): MPE has developed a series of Q&amp;As for patients and patient advocates, covering treatment updates and relevant advocacy topics. Check the following Q&amp;As on access and policy. To check all available Q&amp;As click here. Health technology assessment (HTA)
- [Educational resources on access and policy](https://www.mpeurope.org/what-we-do/access-and-policy/educational-resources-on-access-and-policy/): Find below educational resources on access and policy developed mainly for patient organisations and advocates. Click here to check full educational resources materials for all areas of work: myeloma and AL amyloidosis, access, patient evidence and capacity building and advocacy. Q&amp;As on access and policy Videos and webinars on access and policy
- [Videos and webinars on patient evidence](https://www.mpeurope.org/what-we-do/research/patient-evidence/educational-resources-on-patient-evidence/videos-and-webinars-on-patient-evidence/): Find below videos and webinars on patient evidence mainly for patient organisations and advocates. Click here to check full educational resources materials for all areas of work: myeloma and AL amyloidosis, access, patient evidence and capacity building and advocacy.
- [Q&As on patient evidence](https://www.mpeurope.org/qas-on-patient-evidence/): MPE has developed a series of Q&amp;As for patients and patient advocates, covering treatment updates and relevant advocacy topics. Check the following Q&amp;As on patient evidence. To check all available Q&amp;As click here.
- [How do patients feel about how, when and where they get their myeloma treatment?](https://www.mpeurope.org/what-we-do/research/patient-evidence/treatment-administration/): Project Launch: April 2023 Myeloma patients may undergo many different types of treatment over the course of their cancer. There is already a high burden on patients due to the myeloma diagnosis, complications, and side-effects of treatment. We need evidence about how patients feel about how treatments are administered (i.e. intravenous, subcutaneous or oral routes of administration) and where (i.e. at home, in the community, or in a hospital). This evidence is critical to informed decision-making and to drive change in industry and regulatory institutions as they consider how drugs should be produced and administered. Understanding how patients feel about&hellip;
- [Shared decision-making in myeloma: How can patients and health care professionals work together to choose the right treatments?](https://www.mpeurope.org/what-we-do/research/patient-evidence/shared-decision-making-in-myeloma-what-do-health-care-professionals-working-in-myeloma-need-to-know-from-a-patient-perspective/): Project status: closed This project aimed to develop our understanding of shared decision-making in myeloma.Shared decision-making is a process where patients and healthcare professionals work together to make important decisions about patients’ treatment and care choices. The process brings together the clinician’s medical expertise with the patient’s personal values, concerns, and needs. Patients with myeloma face complex decisions about their treatment. These decisions often involve balancing risks, benefits, and personal goals. Our research aimed to understand how decision-making currently happens in myeloma treatment and care across Europe, and how it can be improved to better meet patient needs. The project involved interviews and an online survey&hellip;
- [The perspectives of myeloma patients and health care professionals on Minimal Residual Disease (MRD)](https://www.mpeurope.org/what-we-do/research/patient-evidence/a-qualitative-study-of-the-perspectives-of-myeloma-patients-and-health-care-professionals-on-minimal-residual-disease-mrd/): Minimal residual disease (MRD) – also called measurable residual disease – refers to a very small number of cancer cells that remain in the body during or after treatment. MRD testing uses advanced laboratory methods that can find one cancer cell among one million normal cells. A positive MRD test result indicates that cancer cells were identified, even at very minute levels, whereas a negative MRD result indicates that cancer cells were not identified. Whilst there are a wide range of scientific articles exploring the application and use of MRD, there are a very limited number of studies assessing the&hellip;
- [What is important to working age people living with myeloma?](https://www.mpeurope.org/what-we-do/research/patient-evidence/needs-of-the-working-age-patients-living-with-multiple-myeloma/): Project status: completed The aim of this research was to better understand the needs of people who are younger than the average age of patients diagnosed with myeloma. MPE wanted to understand better what is important to this younger than average group, and what their needs and priorities are. This evidence is needed to inform future research and the care and treatment of patients. MPE worked with the University of Stirling to conduct this research. The research was carried out in two phases; 1) a systematic literature review, where published literature was synthesised, and 2) interviews with working age myeloma patients&hellip;
- [The importance and challenges of measuring quality of life in myeloma clinical trials](https://www.mpeurope.org/what-we-do/research/patient-evidence/the-importance-and-challenges-of-measuring-quality-of-life-in-myeloma-clinical-trials/): Survival in myeloma has improved substantially over the last two decades. Still, patients face a range of treatment and disease-related events and symptoms, which can negatively influence their quality of life (QoL). To measure QoL and the impact different treatments can have on patients’ lives, clinical trials increasingly gather data reported by patients. Patient-reported QoL and Health-Related QoL data generated during a clinical trial or treatment are known as patient reported outcomes (PRO) and are gathered using questionnaires known as PRO measures (PROMs). A PRO is a report that comes directly from the patient about the status of their health condition without any&hellip;
- [Partners and collaborators](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/reasonable-agreements-between-patient-advocates-and-pharmaceutical-companies-rapp/partners-and-collaborators/): Myeloma Patients Europe (MPE) is the largest European myeloma patient organisation formed by 40 myeloma patient organisations in nearly 30 European countries. MPE is dedicated to providing education, information and support to member groups and to advocating at European, national and local levels for the best possible research and equal access to the best possible treatment and care. MPE initiated this project and is leading it. Workgroup of European Cancer Patient Advocacy Networks (WECAN), in this project represented by MPE, is one of the strongest European communities of patient advocacy leaders of 21 European cancer patient umbrella organisations. Given oncology&hellip;
- [Data available](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/reasonable-agreements-between-patient-advocates-and-pharmaceutical-companies-rapp/data-available/): Based on Advisory Board, Collaborations, Community Speaker and Consultancy agreements, MPE carried out a survey to analyse these contracts in order to find out what problems advocates may have experienced while going through them. These contracts define the terms and conditions of the collaboration such us confidentiality, intellectual property, copyright, data protection, compensation and other responsibilities of both parties. According to the survey “Reasonable agreements between patient advocacy and the pharmaceutical industry” answered by more than 80 patient advocates and representatives of several European and national patient organisations, most of the contracts between pharma and patient organisations are difficult to&hellip;
- [Objectives and scope](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/reasonable-agreements-between-patient-advocates-and-pharmaceutical-companies-rapp/objectives-and-scope/): The project aims to streamline the legal framework between the patient community and the pharmaceutical industry, providing guidance for the content of legal contracts while maintaining reasonable safeguards for both contractual parties. Project objectives included: Development of the Guiding Principles on Reasonable Agreements between Patient Advocates and Pharmaceutical Companies. A series of Guiding Principles were developed via a collaborative approach between the involved parties. The Principles aim to serve as a baseline for the development of contracts and contract templates for patient advocate engagements with industry to ensure reasonable protection for signing parties and to provide guidance to patient advocates&hellip;
- [MPE Masterclass photo and video gallery](https://www.mpeurope.org/what-we-do/capacity-building-advocacy/mpe-masterclass/annual-masterclass-video-gallery/): MPE Masterclass video and photo gallery MPE Masterclass 2025 Myeloma Patients Europe (MPE) held its Masterclass 2025 in Warsaw, Poland, from 2–4 May 2025. The sessions covered key topics for patient organisations, including sequencing of myeloma treatments, managing side effects, the use of Artificial Intelligence (AI) in patient care and treatment, the challenges of early diagnosis and more. Take a look at the event in pictures!  


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