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Myeloma and AL amyloidosis ASH 2023 preview

  The American Society of Haematology Annual Meeting, the world’s largest haematology conference, will be held in person and online from the 9th to the 12th December in San Diego, California, United States. Myeloma Patients Europe (MPE) will attend the meeting to learn about the most important updates in myeloma and AL amyloidosis. MPE will also meet with members, sponsors and stakeholders. Stay tuned to our social media accounts for the latest information during the…

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’ experiences regarding AL amyloidosis diagnosis and treatment, and how these impact on quality of life, MPE conducted qualitative research and published the report “Health-related quality of life, diagnosis and treatment experiences of AL amyloidosis patients.” According to this report, “receiving a diagnosis of AL amyloidosis can make people feel as if they have…

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…

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…

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…

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…

A statement 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:

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.…

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 – 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.   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…

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®).   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…

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.   Melflufen, in combination with dexamethasone,  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…

Job Offer – Access and Policy Manager

Job Title: Access and Policy Manager Position Type: Full time/permanent  Location: Home-based in Belgium, UK, Germany, France or Spain. Other locations in the EU would be considered depending on experience Travel required: 30 days / year (approx.) Gross salary range: 40.000 – 50.000 EUR/year (35.000-45.000 GBP/year)   If you wish to apply or have any questions, please send an email to  with a cover letter and CV.   As Access and Policy Project Manager, you will work…

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.   Talquetamab is a bispecific antibody which targets the…

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.).   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).…

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).…

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…

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…

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

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,…

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”

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].   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…

Happy anniversary 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…

Job offer – Medical and Scientific officer

Job Title: Medical and Scientific Officer Position Type: Mini-job Probation period: six months Location: Germany Gross salary: 520 € monthly (approximately 43 hours a month) Tasks and core responsibilities (non-exhaustive and subject to change depending on the needs of the organisation). As Medical and Scientific officer, you will work in the Medical Education and Scientific Engagement area. You will assist the Head of Medical Education and Scientific Engagement with the following activities:   European Myeloma and…

T2EVOLVE and QUALITOP launch European patient survey on CAR-T treatment

THE IMI T2EVOLVE Project and the Horizon 2020 QUALITOP Project have launched a European patient survey on CAR-T treatment. The survey aims to inform on patient and carer experiences and challenges of receiving CAR-T and to identify information needs and gaps across Europe. The results of the survey will be used for research purposes and published anonymously on project partner websites as well as in academic journals.   The T2EVOLVE-QUALITOP European patient survey on CAR-T…

Study shows the importance of vaccination for myeloma patients

Influenza (i.e. “flu”) and pneumococcal vaccinations positively impact the outcomes of myeloma patients. This is the central conclusion in the article Rates of Influenza and Pneumococcal Vaccination and Correlation with Survival in Multiple Myeloma (MM) Patients: Influenza and Pneumococcal Vaccination in MM, published in Clinical Lymphoma, Myeloma and Leukaemia. The article outlines an analysis of data gathered from INSIGHT-MM, a global real-world study involving myeloma patients, looking at influenza and pneumococcal vaccination rates of patients and…

2022: Year in Review

Myeloma Patients Europe’s (MPE) 2022 Year in Review is snapshot of the major accomplishments from the past year. In this report, you’ll read about MPE’s activities and key accomplishments to empower our members, educate the patient community, shape drug development, address gaps in patient evidence, and increase access to innovative treatments. We look forward to the continued growth and evolution of these initiatives in the years ahead as we continue our efforts to improve patient treatment, care,…

ASH 2022 | Myeloma and AL amyloidosis updates

Myeloma Patients Europe (MPE) is attending the 64th American Society of Hematology (ASH) Annual Meeting, the biggest haematology congress, held from 9 to 13 December in New Orleans (United States). MPE has interviewed haematology experts to summarise the latest updates on myeloma and AL amyloidosis:

Talquetamab generates high response rate in patients with hard-to-treat myeloma

NEW ORLEANS. New research being presented at the 64th American Society of Hematology (ASH) Annual Meeting and Exposition focuses on talquetamab in patients with Relapsed/Refractory myeloma. In an early-phase trial, nearly three-quarters of patients who received talquetamab, a first-in-class experimental immunotherapy for myeloma, saw a significant reduction in cancer burden within a few months. The study participants had all been previously treated with at least three different therapies without achieving lasting remission, suggesting talquetamab could offer new…

Horizon Europe research project looks to improve the affordability and sustainability of innovative health technologies

  Starting in December 2022, the HORIZON-funded project ASCERTAIN (Affordability and Sustainability improvements through new pricing, Cost- Effectiveness and Reimbursement models to Appraise innovative health technologies) will address the need of patients, physicians, payers, regulators, and manufacturers to improve the affordability and accessibility to innovative health technologies (including pharmaceuticals) in Europe. Affording newly approved innovative health technologies (IHTs) is challenging in many health systems.

Join MPE’s webinar on Access Barriers to Clinical Trials in CEE Countries

Myeloma Patient Europe (MPE) has been aware of the lack of clinical trials opening in many Central and Eastern European (CEE) countries, as well as inequalities in access with CEE countries for participating in ongoing trials. To gather data on, and further understand the access situation, MPE conducted research on barriers and facilitators to clinical trials, with a specific focus on CEE countries. The research was completed under the guidance of MPE members from across the region through its CEE…

Myeloma diagnosis can take over 5 months and require more than 4 medical consultations with more than 3 different specialists

Brussels, 27 September 2022 – For some European myeloma patients, their diagnosis can take over 5 months, require more than 4 medical consultations and involve visits to at least 3 different medical specialists. These are some of the findings of pan-European research conducted by Myeloma Patients Europe (MPE) with the aim of exploring patient and doctor (haematologist) experiences of myeloma diagnosis. MPE ran a survey, and several focus groups and interviews, in which more than 600…

Meet Lise-Lott Eriksson, president of Myeloma Patients Europe (MPE)

Since 2015 Lise-Lott has been Chairman of the Swedish Blood Cancer Association, previously Chairman of the Blood Cancer Society in Stockholm and now the president of Myeloma Patients Europe (MPE). Lise-Lott is very active in policy-related issues within the Swedish cancer care area. She focuses on access to new drugs for haematological disorders (especially myeloma), reimbursement, pricing, patient influence in clinical trials and health technology assessment decisions. She works actively to raise the status of…

EMA recommends conditional marketing authorisation in Europe for teclistamab for relapsed and refractory myeloma

The European Medicines Agency (EMA) has recommended a conditional marketing authorisation in the European Union (EU) for teclistamab for the treatment of adult patients with relapsed and refractory myeloma, who have received at least three prior therapies, including an immunomodulatory agent, a proteasome inhibitor and an anti-CD38 antibody, and whose cancer has worsened since receiving the last treatment. Teclistamab, alternatively known under the branded name Tecvayli, is a monoclonal antibody that targets two proteins at the same time: a protein called…

Study shows myeloma caregivers experience higher levels of anxiety than the patients they support

  According to a new study published in Blood Advances, caregivers for patients with myeloma may suffer from higher rates of anxiety and depression than patients themselves. While medical professionals have long acknowledged the toll a serious or terminal diagnosis can have on a person’s mental health, few studies have investigated how these conditions affect the family members, friends, and loved ones who care for these individuals.

Sign up for CAR-T treatment focus group discussions

MPE will hold a focus group to find out more about CAR-T from a patient perspective. We will be asking questions that relate to quality of life measurement within CAR-T clinical trials and to the wider impact of CAR-T on individuals and their partners, family members, carers, or friends.  

EHA 2022 highlights in myeloma and AL amyloidosis

  The European Hematology Association’s (EHA) annual congress, one of the most important haematology congresses here in Europe, was held in Vienna, Austria from 9 June to 12 June 2022 in a hybrid format. Myeloma Patients Europe (MPE) attended EHA 2022 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.  

European Commission grants conditional approval to CAR-T cell therapy Carvytki (cilta-cel)

The European Commission has granted conditional approval to CAR-T cell therapy Carvytki (cilta-cel) for the treatment of relapsed and refractory myeloma.   It has been specifically approved for myeloma patients who have received at least three prior treatments, including a proteasome inhibitor (such as bortezomib and carfilzomib), an immunomodulatory agent (such as lenalidomide or pomalidomide) and an anti-CD38 antibody (such as daratumumab or ixatuximab), and have demonstrated disease progression on last treatment. You can find the full…

MPE endorses the International COVID-19 Blood Cancer Coalition’s (ICBCC) patient impact statement

A multi-stakeholder coalition consisting of more than 60 representatives from the global patient advocacy and clinical community has formed the International COVID-19 Blood Cancer Coalition (ICBCC) to address the specific impact of the pandemic on immunocompromised blood cancer patients and to recommend solutions and actions to mitigate those risks. The special vulnerability of those with blood cancers and others needs to be addressed in a proactive way. While we need to be prepared for surprises…

MPE support for Ukrainian myeloma and AL amyloidosis patients

Myeloma Patients Europe (MPE) is here to support Ukrainian patients during this ongoing crisis. If you are a myeloma or AL amyloidosis patient in Ukraine or a refugee in another European country and in need of information on how to access treatment and support, please contact us at .

US FDA approves ciltacabtagene autoleucel (CARVYKTI) for relapsed or refractory myeloma

The US Food and Drug Administration (FDA) has approved the CAR-T treatment ciltacabtagene autoleucel (also known as cilta-cel and marketed as Carvykti). Manufactured by Janssen, it is specifically approved for the treatment of patients with relapsed or refractory myeloma after four or more prior lines of therapy, including a proteasome inhibitor (like bortezomib), an immunomodulatory agent (like lenalidomide), and an anti-CD38 monoclonal antibody (like daratumumab or isatuximab). You can find the full Janssen press release…

A note from MPE on the situation in Ukraine

Given the recent events on the world stage, we felt it was necessary to highlight our concern at the developing situation in Ukraine and to reiterate our support to patients, carers and our fellow patient advocacy groups within the country and in surrounding countries. 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…

Access to generic lenalidomide (e.g. Revlimid) in Europe

Sandoz, a manufacturer of generic medicines, announced the launch of generic lenalidomide in 19 European countries. You can see the full press statement here.    Alternatively known under the branded name “Revlimid”, lenalidomide is a drug licensed and commonly used in the treatment of myeloma – in newly diagnosed, maintenance and relapsed settings.   Lenalidomide was first approved by the European Medicines Agency (EMA) in 2008 and has been solely marketed in Europe by Celgene…

Myeloma Patients Europe appoints Interim CEO

Myeloma Patients Europe (MPE) is pleased to share that Hans Scheurer, President of MPE, will be acting as Interim Chief Executive Officer (CEO) until a permanent CEO is appointed in the coming months.   This follows last year’s news that the founding CEO of MPE, Ananda Plate, has stood down from the role after ten very successful years.   Hans will be supported in his role as Interim CEO by a formal management committee, who…

MPE launches survey on myeloma and AL amyloidosis diagnosis

As part of MPE’s Year of Action, we are excited to announce the launch of the survey on myeloma and AL amyloidosis diagnosis. At MPE, we know that early diagnosis significantly improves the outcomes and quality of life of patients and their experience of healthcare. The survey seeks to understand the perspectives of myeloma and AL amyloidosis patients, as well as haematologists, on the diagnosis challenges. The survey will take approximately 5 minutes to complete and is…

MPE Publishes 2021: Year in Review

Today Myeloma Patients Europe (MPE) published our 2021: Year in Review, a snapshot of the major accomplishments from the past year.   In 2021, MPE launched two projects that will provide distinct and indispensable resources for the patient community: the launch of the redesigned Myeloma Access Atlas, helping the patient community to advocate more effectively for equal access to medicines, and the development of the European Myeloma Clinical Trial Navigator, which will significantly improve patients’…

ASH 2021| over 50% of myeloma patients reach minimal residual disease negativity with Isatuximab in combination with RVd

During the 63rd American Society of Hematology (ASH) Annual Meeting and Exposition a study was presented about a phase III trial for treating myeloma. This treatment supports the current three-drug standard of care with a fourth drug, a monoclonal antibody that is designed to fight cancer while also stimulating the immune system.   According to results from the first primary endpoint of the phase III trial, the patients that have been newly diagnosed with myeloma…

Myeloma and AL amyloidosis ASH 2021 preview

The world’s largest haematology conference will be held in person and virtually this year from the 11th to 14th of December. Despite the continued difficulties and limitations posed by the coronavirus pandemic, this year’s American Society of Haematology Annual Meeting will feature, more than 200 abstracts in myeloma and AL amyloidosis.

Myeloma Patients Europe (MPE) relaunches Myeloma Access Atlas platform

Myeloma Patients Europe (MPE) has today relaunched the Myeloma Access Atlas, an online platform designed to provide myeloma and AL amyloidosis patient advocates with the information and tools needed to work effectively on access issues. Explore the Platform here.   The Atlas provides country-specific and comparative information on European healthcare systems, including data on system performance and on access inequalities to myeloma treatments. The aim behind the data and tools provided is to identify, understand…

Register to attend ASH 2021!

  Last March, a number of hematology patient associations, including Myeloma Patients Europe (MPE), coordinated by the Acute Leukemia Advocates Network, wrote a letter to the American Society of Hematology (ASH) that patient advocates need free access to the ASH Annual meeting. The message was heard and non-profit patient advocates (employees and volunteers) from registered patient organisations can now apply to attend the 63rd ASH Annual Meeting in December.

CAR-T cell therapy in myeloma

  CAR-T is a form of immunotherapy recently approved for the treatment of myeloma in the United States and Europe. While the process of manufacturing and administrating this treatment as well as side effects can be challenging, results of clinical trials have been promising in myeloma.

Daratumumab subcutaneous, first approved treatment for newly diagnosed AL amyloidosis in Europe

  The European Commission (EC) has granted marketing authorisation for the expanded use of daratumumab (Darzalex®) subcutaneous (SC) formulation in two new indications. The first authorisation of these new indications is for the use of daratumumab SC in combination with bortezomib, cyclophosphamide and dexamethasone (D-VCd) for the treatment of adults with newly diagnosed systemic light chain (AL) amyloidosis. This approval makes this daratumumab-based regimen the first approved therapy for AL amyloidosis in Europe.

EHA 2021| Daratumumab plus lenalidomide and dexamethasone (D-Rd) shows overall survival benefit in elderly patients with transplant-ineligible newly diagnosed myeloma

   The phase 3 MAIA study evaluated D-Rd versus Rd in 737 patients who were ineligible for high-dose chemotherapy and autologous stem cell transplantation. The primary analysis of MAIA demonstrated a 44% reduction in the risk of disease progression or death after treatment with D-Rd compared with Rd alone. At a median follow-up of almost 5 years (56.2 months), we now report the pre-specified interim overall survival analysis of MAIA according to the results presented…

EHA 2021 | Daratumumab maintenance improves Progression-Free Survival (PFS) after autologous stem cell transplantation in myeloma

  The European Hematology Association’s annual congress (EHA 2021) is one of the most important haematology congresses in Europe and it is taking place from 9 to 17 June.    Results from Part 1 of the CASSIOPEIA phase-3 study compared the addition of daratumumab to bortezomib, thalidomide, and dexamethasone (D-VTd) induction/consolidation with VTd alone in transplant-eligible patients with newly diagnosed myeloma has been presented.

EHA 2021 | Patient preferences in myeloma, a qualitative multinational study in myeloma

   Today, Myeloma Patients Europe (MPE) and KU Leuven present findings from a study at the European Haematology Association 2021 congress (EHA 2021), which aimed to understand which characteristics of treatment myeloma patients find most important. This study illustrates that patients focus not only on treatment efficacy, but also value a reduction of myeloma-related symptoms and side effects. The study is part of a wider project, called PREFER, examining how to represent patients in drug…

Horizon2020 CARAMBA Myeloma Pipeline information sheet now available in five languages

  As part of the CARAMBA consortium, Myeloma Patients Europe (MPE) has developed an information sheet to explain the main goals and characteristics of the CARAMBA clinical trial investigating SLAMF7 chimeric antigen receptor T-cell (CAR-T) therapy. This publication discusses some potential CAR-T side effects and considerations for patients and caregivers. This information sheet has been previously published on our website in English and is now available in four additional languages: French, Italian, Spanish and German.

The FDA approves the first anti-BCMA CAR-T Cell Therapy for myeloma, idecabtagene vicleucel (Abecma)

   CAR-T cell therapy is a promising therapy option under investigation for the treatment of myeloma.. Different products are being studied, many with preliminary results showing high rates of response. Up until now there have been no approved CAR-T products for myeloma, however, CAR-T is now a reality after the US Food and Drug Administration (FDA) approved idecabtagene vicleucel (Abecma) as the first CAR-T cell therapy for treatment of relapsed/refractory myeloma.

Selinexor receives Conditional Marketing Authorisation in Europe for the treatment of relapsed and or refractory myeloma patients

   The European Commission (EC) has granted conditional marketing authorization for selinexor, a first-in-class, oral Selective Inhibitor of Nuclear Export (SINE) medicine, in combination with dexamethasone for the treatment of myeloma in adult patients who have received at least four prior therapies and whose disease is refractory to at least two proteasome inhibitors, two immunomodulatory agents, and an anti-CD38 monoclonal antibody, and who have demonstrated disease progression on the last therapy.

The Reality of CAR T-cell Therapy: Am I Eligible?

   Chimeric antigen receptor T cell (CAR T-cell) therapy is a form of immunotherapy that is currently being investigated in clinical trials for the treatment of myeloma. Immunotherapy works by using your immune system to fight cancer. In CAR-T-cell treatment, a type of immune cell, known as T cells, are genetically programmed with a chimeric antigen receptor (CAR) protein that enables them to recognise and destroy cancerous myeloma cells in your body.

The FDA approves melphalan flufenamide for patients with relapsed or refractory myeloma

    The U.S. Food and Drug Administration (FDA) has approved melphalan flufenamide (PEPAXTO®), also known as melflufen, in combination with dexamethasone, for the treatment of adult patients with relapsed or refractory myeloma, who have received at least four prior lines of therapy and whose disease is refractory to at least one proteasome inhibitor, one immunomodulatory agent, and one CD38-directed monoclonal antibody.

Job offer – Research Assistant

   Location: Scotland / home based (approx. 10 travel days per year) Contract: 40 hours per week / permanent Salary: £25,000 – £27,000 depending on experience   This Research Assistant post supports the research function of Myeloma Patients Europe (MPE). There are two main elements to the job – supporting communication and dissemination of SISAQOL-IMI and to assist with generating patient centred evidence as part of MPE’s newly established Evidence Generation Unit (EGU). The following…

Generating recommendations for patient- reported outcome (PRO): SISAQOL-IMI

  An international multidisciplinary consortium, guided by the European Organisation for Research and Treatment of Cancer (EORTC), has been convened to generate recommendations to standardize the use, analysis, and interpretation of PRO data in cancer clinical trials. Myeloma Patients Europe (MPE) is one of the partners in this project representing the Workgroup or European Cancer Patient Advocacy Networks (WECAN).

Horizon2020 CARAMBA clinical trial information sheet

  CARAMBA is a Horizon 2020 project investigating an innovative immunotherapy for the treatment of myeloma called Chimeric Antigen Receptor T-cell (CAR-T) therapy. CAR-T is a form of immunotherapy, which has demonstrated outstanding efficacy against various haematologic malignancies.

Selinexor receives positive opinion from the EMA for the treatment of refractory myeloma

  The European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) has adopted a positive opinion recommending the conditional approval for selinexor in combination with dexamethasone for the treatment of adult myeloma patients who have received at least four prior therapies and whose disease is refractory to at least two proteasome inhibitors, two immunomodulatory agents, and an anti-CD38 monoclonal antibody, and who have demonstrated disease progression on the last therapy.

3rd edition of the European CAR T-cell Meeting

    CAR-T-cell treatment is thought to be one of the most promising therapies in development for the treatment of myeloma. There are several ongoing clinical trials evaluating the safety and efficacy of CAR-T-cells, and  some of the studies with very encouraging results.

In Memoriam of Anna Rovira

    It is with great sadness that we share that our friend, colleague, and fellow patient advocate, Anna Rovira, passed away during the night of the 26 January 2021 after a short but very intense battle against cancer.

ASH 2020 AL amyloidosis highlights

      Myeloma Patients Europe interviewed Dr Giampaolo Merlini, the Research Director and AL amyloidosis expert from Policlinico San Matteo, University of Pavia, in Italy, to summarise the main highlights on this disease presented at the American Society of Hematology (ASH) Annual Meeting. Click to hear a summary of the most important studies presented at ASH 2020 and his views on the future of AL amyloidosis treatment.  

ASH 2020 | The phase III trial Apollo supports administering daratumumab subcutaneously instead of intravenously in relapsed or refractory myeloma patients

    A new study suggests the monoclonal antibody daratumumab has similar benefits when delivered via subcutaneous injection as it does when delivered intravenously to patients which myeloma persists or recurs after first-line treatments. Patients given subcutaneous daratumumab along with the immunomodulator pomalidomide and the anti-inflammatory steroid dexamethasone were 37% less likely to die or have their disease worsen compared to patients who received pomalidomide and dexamethasone alone in the phase III trial.

Myeloma and AL amyloidosis ASH 2020 preview

  The world’s largest haematology conference will be held virtually this year from the 5th to 8th of December. Despite the difficulties and limitations posed by the coronavirus pandemic, this year’s American Society of Haematology Annual Meeting will feature , more than 200 abstracts in myeloma and AL amyloidosis.

Open call to participate in the Advocate Develpment Programme (ADP)

  As part of Myeloma Patients Europe’s (MPE) ongoing work to ensure that the patient voice is fully represented, and to strengthen organizations’ and individuals’ ability to advocate effectively, in 2017 MPE created the Advocate Development Program (ADP). The ADP is a 12-month training programme designed to develop participants’ advocacy knowledge and skills to better serve patients locally, nationally, and across Europe. Through the course, participants improve their understanding of clinical research and development, mechanisms…

MPE sponsorship to attend the European Cancer Summit 2020

  This year, the European Cancer Summit 2020 will take place on November 18 – 19 as a virtual congress. To help support our members in their ongoing education and advocacy, MPE will be sponsoring one representative from each member organisation to attend European Cancer Summit 2020 as a patient advocate.

A phase 1/2 study will evaluate meulflufen in AL amyloidosis

  The pharmaceutical company Oncopeptides has announced that the first patient has been enrolled in the OP-201 study. This is an open-label, phase 1/2 study to evaluate melflufen and dexamethasone in AL amyloidosis patients, following at least one prior line of therapy. This is the first study to explore the effect of melflufen outside of myeloma.

The FDA approves belantamab mafodotin for relapsed or refractory myeloma

  The US Food and Drug Administration (FDA) has approved belantamab mafodotin (BLENREP) as a monotherapy treatment for adult patients with relapsed or refractory myeloma who have received at least four prior therapies including an anti-CD38 monoclonal antibody, a proteasome inhibitor and an immunomodulatory agent. This indication is approved under accelerated approval based on response rate. Continued approval for this indication may be contingent upon verification and description of clinical benefit in confirmatory trials. This…

Belantamab mafodotin receives positive opinion from the EMA for relapsed and refractory myeloma

The Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) adopted a positive opinion recommending the approval of belantamab mafodotin as monotherapy for the treatment of myeloma in adult patients, who have received at least four prior therapies and whose disease is refractory to at least one proteasome inhibitor, one immunomodulatory agent, and an anti-CD38 monoclonal antibody, and who have demonstrated disease progression on the last therapy.

Defining a set of treatment outcomes in myeloma

  The Healthcare Alliance for Resourceful Medicines Offensive against Neoplasms in Haematology (HARMONY) is working to define a set of treatment outcomes (COS) by using a multi-round survey (known as a Delphi survey) to reach consensus amongst patients and other stakeholder groups.

ASCO and EHA highlights in myeloma and AL amyloidosis

The American Society of Clinical Oncology Annual Meeting (ASCO2020) is the largest and one of the most important congresses for the oncology community. Many myeloma and AL amyloidosis updates were presented at this congress which was held from 29 to 31 May 2020. Two weeks later, the 25th edition of the European Hematology Association’s annual congress (EHA25 Virtual), one of the most important haematology congresses here in Europe, was held from 11 June to 21…

MPE COVID-19 Scholarship Programme

  As part of the work that Myeloma Patients Europe (MPE) is doing to provide members with support during the COVID-19 pandemic, MPE is extending the MPE Scholarship and Capacity Building Programme. Through this extension, MPE will be offering up to 10 scholarships between 2.500 and 5.000€ to develop or adapt programmes or activities related to or affected by COVID-19 or to support the organisation’s capacity, sustainability or resilience in relation to the impact of…

EHA 25 Virtual – Myeloma highlights

  Data of new combinations not only in relapsed and refractory myeloma but also in upfront settings were presented in the European Hematology Association (EHA) Annual congress, held virtually from 11 June to 21 June 2020. Myeloma Patients Europe (MPE) has interviewed Dr Maria-Victoria Mateos, Director of the Myeloma Unit at University Hospital of Salamanca-IBSAL, in Spain, to summarise the most important updates presented at this meeting for the treatment of myeloma patients.

EHA25 Virtual – AL amyloidosis highlights

  Although currently there are not approved drugs for the treatment of AL amyloidosis, important data were presented in the European Hematology Association (EHA) Annual congress, held virtually from 11 June to 21 June 2020. Myeloma Patients Europe (MPE) has interviewed Dr Moshe Gatt, Hadassah Hebrew University Medical Center, Jerusalem (Israel), and one of the authors of the ANDROMEDA study, to summarise the most important updates presented at this meeting for the treatment of the…

Positive results of selinexor, bortezomib, and dexamethasone in myeloma patients who have received one to three prior lines of therapy

  New data of the phase 3 Boston clinical trial were presented at the American Society of Clinical Oncology (ASCO) Annual Meeting held virtually from 29 to 31 May 2020. This study evaluates weekly selinexor, bortezomib, and dexamethasone (SVd) versus twice weekly bortezomib and dexamethasone (Vd) in myeloma patients who have received one to three prior lines of therapy.

EHA 2020 – Subcutaneous daratumumab shows improved clinical outcomes in AL amyloidosis

  New data of the ANDROMEDA clinical trial has been presented today in the late breaking session at the 25th European Hematology Association (EHA) Annual Congress which is happening virtual from 11 to 21 June. This study evaluates subcutaneous (SC) daratumumab in combination with cyclophosphamide, bortezomib, and dexamethasone (D-CyBorD) compared to CyBorD alone in newly diagnosed patients with AL amyloidosis.

European Commission grants Marketing Authorisation for subcutaneous daratumumab for all approved intravenous daratumumab indications

  The European Commission (EC) has granted marketing authorisation for daratumumab (Darzalex®) subcutaneous (SC) formulation for the treatment of adult myeloma patients. Daratumumab SC is administered as a fixed dose, which significantly reduces treatment time, from hours to approximately three to five minutes, when compared to daratumumab intravenous (IV) formulation.

ASCO 2020 – CAR-T cell therapy highlights in myeloma

  CAR-T cell therapy is one of the most promising treatments in a number of types of cancer. In myeloma, very promising results were presented during the American Society of Clinical Oncology (ASCO) Annual Meeting. Dr Hermann Einsele, Director of the Department of Internal Medicine II at the Würzburg University Hospital, summarises for Myeloma Patients Europe (MPE) the most important CAR-T cells updates in myeloma at ASCO 2020.

ASCO 2020 myeloma highlights

  The largest, and one of the most important, oncology meetings in the calendar year, the American Society of Clinical Oncology (ASCO) annual scientific meeting, was held from 29 to 31 May. Myeloma Patients Europe attended this virtual meeting and interviewed Dr Katja Weisel, University Medical Center Hamburg-Eppendorf in Germany, to summarise the most important myeloma highlights presented at ASCO20.

Relevant myeloma and AL amyloidosis sessions at ASCO20 Virtual Scientific Program

  From 29 to 31 May, the American Society of Clinical Oncology (ASCO) will hold its annual scientific meeting. This is the largest, and one of the most important, oncology meetings in the calendar year. For the first time, ASCO20 will be held virtually adapting its programme and sessions to the COVID-19 situation. The programme will still feature over 250 oral abstract presentations and 2,500 poster presentations in 24 disease-based and speciality tracks. All presentations will…

COVID-19 treatment in myeloma patients

  A case study of a patient in Wuhan, China, suggests that the immunosuppressant tocilizumab may be an effective COVID-19 treatment for very ill patients who also have myeloma and other blood cancers.

How to cope with confinement during the COVID-19 outbreak

  The increase in the number of people affected by COVID-19 (coronavirus) has generated great concern, and has forced a number of countries to implement measures in order to stop the spreading of the virus. These measures are, in many countries, very restrictive and can include social distancing and working from home in a situation of self-quarantine or isolation, in order to avoid infection of self, and others.

Job offer – Scientific Engagement Manager

  Myeloma Patients Europe (MPE), an European umbrella organisation representing myeloma and AL amyloidosis patient groups, is seeking an experienced Scientific Engagement Manager to develop the scientific and medical strategy of the organisation and to ensure all organisational programmes are underpinned by sound scientific information.

Isatuximab receives positive opinion from the EMA for the treatment of relapsed and refractory myeloma patients

  The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has adopted a positive opinion for isatuximab (Sarclisa®). The CHMP recommends this drug in combination with pomalidomide and dexamethasone (pom-dex) for the treatment of adult patients with relapsed and refractory myeloma who have received at least two prior therapies including lenalidomide and a proteasome inhibitor and have demonstrated disease progression on the last therapy.

MPE, WECAN, PFMD and over 10 pharmaceutical companies launch 4 reference agreements for legal engagements

  Collaboration between pharmaceutical companies and patient advocates often requires both parties to sign contracts covering various types of activities such as consultancy, collaborations, speaking engagements and advisory boards. These contracts define the terms and conditions of the engagements, covering such matters as confidentiality, intellectual property, copyright, data protection, compensation and other responsibilities of both parties. They typically also contain provisions, mandated by the pharmaceutical industry codes, designed to ensure an appropriate relationship between patient…

MPE AGM 2020 webinar series

As part of the educational programme planned to replace the Masterclass included in the MPE Annual General Meeting (AGM) 2020, which was cancelled due to the outbreak of the coronavirus infection, MPE is organising a Webinars series.

Positive results of selinexor in relapsed and refractory myeloma patients presented at ASH 2019

  Selinexor is a first-in-class, oral Selective Inhibitor of Nuclear Export (SINE) compound that is approved the United States Food and Drug Administration (FDA) in combination with dexamethasone for the treatment of adult patients with relapsed or refractory multiple myeloma (RRMM) who have received at least four prior therapies and whose disease is refractory to at least two proteasome inhibitors, at least two immunomodulatory agents, and an anti-CD38 monoclonal antibody. During the American Society of…

ASH 2019 Pre-clinical myeloma updates

  Dr Faith Davies, NYU Langone Hospital, New York, USA, explains in this video the pre-clinical myeloma updates presented in the American Society of Hematology (ASH) Annual Meeting 2019 and why are those important to patients.

Bispecific antibodies at ASH 2019

  Along with CAR-T cell treatment, bispecific antibodies has been one of the most important topics discussed at the American Society (ASH) Annual Meeting. This family of drugs has shown very promising results in early phases of clinical trials in heavily pre-treated myeloma patients. Dr Mohamad Mohty, Head of Haematology and and Celular Therapy Department, Saint-Antoine Hospital and University Pierre & Marie Curie, Paris, France, summarises for Myeloma Patients Europe (MPE) the most important updates…

Real World Evidence at ASH 2019

  Real World Evidence (RWE) is becoming more and more important not only for clinicians but also for scientific meetings such as the American Society of Hematology (ASH) Annual Meeting. Dr Faith Davies, NYU Langone Hospital, New York, USA, summarises in this video the most important updates regarding Real World Evidence in myeloma presented at ASH 2019.

ASH 2019 updates on Minimal Residual Disease (MRD)

Minimal Residual Disease (MRD) is one of the big topics in myeloma. Different techniques to measure MRD and new data about its role in predicting the risk of relapse are some of the topics discussed during the American Society of Hematology (ASH) Annual Meeting. In this video Dr Francesca Gay, University of Torino, Italy, explains for Myeloma Patients Europe (MPE) what was presented at ASH 2019 regarding MRD and the unanswered questions about its role…

ASH 2019 CAR-T cell therapy in myeloma

  CAR-T cell therapy is one of the most promising treatments in a number of types of cancer. In myeloma, very promising results were presented during the American Society of Hematology (ASH) Annual Meeting. Dr Mohamad Mohty, Head of Haematology and and celular therapy department, Saint-Antoine Hospital and University Pierre & Marie Curie, Paris, France, summarises for Myeloma Patients Europe (MPE) the most important CAR-T cells updates in myeloma at ASH.

ASH 2019 myeloma highlights

More than 900 myeloma abstracts (posters and oral sessions) were presented in the largest world congress of hematology: the American Society of Hematology (ASH) Annual Meeting 2019 that was held from 7 to 10 December 2019 in Orlando, Florida, USA. Dr Faith Davies, NYU Langone Hospital, New York, USA, summarises in this video the most important myeloma updates presented at ASH 2019.

Positive results of the clinical trial Candor at ASH 2019

  ASH 2019 – Orlando. The big “late-breaking” news at the American Society of Hematology Annual Meeting are the results of the phase III Candor trial. Dr Katja Weisel, University Medical Center Hamburg-Eppendorf in Germany, explains for Myeloma Patients Europe (MPE) in this video the main results of this clinical trial.

ASH 2019 AL amyloidosis highlights

Dr Moshe Gatt, Hadassah Hebrew University Medical Center, Jerusalem (Israel) summarised for Myeloma Patients Europe (MPE) the main updates on AL amyloidosis presented at the American Society of Hematology (ASH) Annual Meeting held from 7 to 10 December 2019 in Orlando, Florida, USA.

Breaking the glass ceiling of age in transplant in myeloma

  ASH 2019, Orlando – Even though autologous hematopoietic cell transplantation (AHCT), a form of stem cell therapy, is an effective treatment for multiple myeloma, only four out of 10 patients receive this therapy. Myeloma occurs most often in people over 60 and the age is usually the main reason for avoiding this procedure.

Dreamm-3, the clinical trial on the new myeloma drug belantamab mafodotin, presented at ASH 2019

  ASH 2019, Orlando – Belantamab mafodotin is a new myeloma drug that has shown very promising results. The clinical trial Dreamm-3 was presented yesterday at the American Society of Hematology (ASH) Annaul Congress and it is expected to be the European approval trial for this drug. Dr Katja Weisel, University Medical Center Hamburg-Eppendorf in Germany, explains for Myeloma Patients Europe (MPE) what we need to know about this first-in-class drug.

Second-generation CAR T-cell products may overcome resistance, reduce toxicity and simplify treatment

  ASH 2019, Orlando – A number of early-phase studies were presented yesterday during the 61st American Society of Hematology (ASH) Annual Meeting spotlight the rapid advances being made in cellular immunotherapy for blood cancers. Researchers will present the results of early-phase studies of emerging “second-generation” cellular immunotherapy products that strive to overcome the limitations of existing products.

New data show HARMONY Alliance’s big data platform can improve the prognostic tool for myeloma patients

  ASH 2019, Orlando – New data presented by the HARMONY Alliance validate the current prognostic tool for Multiple Myeloma and have identified new parameters to improve the staging of the disease according to a press release publish by the Harmony Alliance. Myeloma Patients Europe (MPE) is part of the HARMONY Patient Cluster which is a unique group of 7 European Patient Umbrella Organizations working in the different areas of hematological diseases within the HARMONY…

Job offer – Senior Office Assistant

MPE is looking for a Senior Office Assistant. Would you like to join the MPE team? Apply for this job offer by sending your CV and motivation letter to Ananda Plate . Full time / permanent Approx. 10 days of travel per year Munich, Germany Salary: 35.000-40.000 EUR GROSS per year

Myeloma ASH 2019 preview

  More than 900 myeloma abstracts (posters and oral sessions) will be presented in the largest world congress of hematology: the American Society of Hematology (ASH) Annual Meeting 2019 that will be held from 7 to 10 December 2019 in Orlando, Florida, USA.

New round of Myeloma-CABs

  Myeloma Patients Europe (MPE) is holding another round of Myeloma Community Advisory Board (Myeloma-CAB) meetings from 17 – 18 November in Munich, Germany. The Myeloma-CAB focuses on providing patient perspectives and advice on clinical development in myeloma, challenges in access to myeloma medicines and patient engagement in myeloma research and development. These meeting ensure meaningful and systematic engagement with the patient community in Europe.

Positive results of ixazomib as first line maintenance therapy in patients with myeloma who did not undergo stem cell transplant

  The randomized, placebo-controlled, double-blind Phase 3 clinical trial TOURMALINE-MM4 showed significant improvement in Progression-Free Survival (PFS) of Ixazomib (commercialised by Takeda as Ninlaro) as first line maintenance therapy versus placebo in adult myeloma patients not treated with stem cell transplantation. This clinical trial is the first industry sponsored phase 3 trial to explore the concept of “switch” maintenance, the use of medicines not included in initial induction therapy, in this setting.

ISPOR Europe 2019

  The professional society for health economics and outcomes research, ISPOR, organises its annual meeting in Copenhagen, Denmark. From 2 to 6 November experts attending this meeting will debate value in healthcare beyond cost-containment and short-term interventions.

ESMO 2019 photo gallery

More than 3.900 abstracts have been submitted to the European Society for Medical Oncology Congress (ESMO) Annual Congress which will be held from 27 September to 1st October 2019 in Barcelona, Spain.

European Commission approves elotuzumab plus pomalidomide and dexamethasone for relapsed and refractory myeloma

  European Commission (EC) has approved elotuzumab  –marketed under the brand Empliciti by Bristol-Myers Squibb (BMS)– plus pomalidomide and low-dose dexamethasone (EPd) for the treatment of adult patients with relapsed and refractory multiple myeloma who have received at least two prior therapies, including lenalidomide and a proteasome inhibitor (PI), and have demonstrated disease progression on the last therapy.

WECAN holds its first training academy

  With the aim of addressing common educational needs of the cancer advocacy community, the Workgroup of European Cancer Patient Advocacy Networks (WECAN) held the first WECAN Academy from 6-9 July 2019 in Frankfurt, Germany.

MMPredict consortium presents data on quality of life and cost effectiveness of risk at EHA 2019

MMPredict is a HORIZON 2020 project, which Myeloma Patients Europe (MPE) is involved in, aimed at clinically validating a personalised medicines tool that predicts the most effective treatment options for myeloma patients. As part of MMPredict, MPE has been involved in the development and dissemination of a survey  assessing the quality of life of European myeloma patients, particularly relating to currently available myeloma treatments and how side-effects impact upon them.

WECAN Academy 2019

  The first WECAN Academy organised by the Workgroup of European Cancer Patient Advocacy Networks (WECAN) will take place 6-9 July 2019 in Frankfurt, Germany. This training programme is aimed at growing the knowledge and skills of more than 100 European leading patient advocates, and those who joined the community more recently, in the areas of:

HARMONY reaches milestone capturing data from 45,000 patients with blood cancers

  The HARMONY Alliance is a public-private partnership of more than 80 organizations (53 Partners and 35 Associated Members) funded by the Innovative Medicines Initiative for a period of 5 years (2017-2021). Myeloma Patients Europe (MPE) is part of the HARMONY Patient Cluster which is a unique group of 7 European Patient Umbrella Organizations working in the different areas of hematological diseases within the HARMONY Alliance.

Myeloma Patients Europe webinar on personalised medicines in myeloma

  Myeloma is the disease with the highest number of approved drugs over the last 15 years. Actually, the prognosis of the disease has been tripled. As myeloma is a very heterogeneous disease, not all treatments are suitable for each patient. The challenge now is to choose the right treatment for each individual patient in order to improve patient health outcomes, increase the value of new medicines to healthcare systems and reduce healthcare costs. With…

EHA 2019 photo gallery

The 24th Congress of the European Hematology Association (EHA) started this Thursday in Amsterdam with the biggest attendance in its history. More than 12.000 attendees get together to discuss the latest developments in haematology.

Myeloma Patients Europe (MPE) holds first Myeloma CAB

  In addition to providing education, information and support to its 46 member-groups across 30 European countries, Myeloma Patients Europe (MPE) advocates for the best possible research and equal access to the most innovative treatment and care. With this aim, MPE has developed a series of Community Advisory Boards (CABs) focused on myeloma.

Takeda announces discontinuation of the phase 3 clinical trial TOURMALINE-AL1 in AL amyloidosis

  The pharmaceutical company Takeda announced that the Phase 3 TOURMALINE-AL1 clinical trial in patients with relapsed or refractory AL amyloidosis did not meet the first of two primary endpoints. Treatment with ixazomib in combination with dexamethasone did not demonstrate a significant improvement in overall hematologic response compared to physician’s choice of standard of care regimens. As a result of this analysis, Takeda has decided to discontinue the trial.

ASCO 2019 myeloma highlights

More than 40,000 people attended the American Society of Clinical Oncology (ASCO) Annual Meeting (ASCO 2019) which was held in Chicago from 31 May until 4 June. This meeting brings together oncology and haematology professionals from across the globe to discuss the latest scientific and treatment developments in the field. A number of myeloma topics were presented in this important scientific meeting. The most important updates are outlined below.

ASCO 2019 – Good results of the anti-BCMA Bispecific T cell engager (BiTE) immunotherapy in relapsed or refractory myeloma patients

  ASCO 2019, Chicago – New data of a first-in-human (FIH) phase I dose escalation study evaluating AMG 420, a B-cell maturation antigen (BCMA)-targeting BiTE molecule, were presented at the 55th Annual Meeting of the American Society of Clinical Oncology (ASCO) in Chicago. Data presented included updated investigational AMG 420 safety and efficacy results in patients with relapsed and/or refractory multiple myeloma (RRMM). BiTE technology is a targeted immuno-oncology platform that is designed to engage…

ASCO 2019 – Study shows that private insurance or higher regional incomes predict longer survival for myeloma patients

  ASCO 2019, CHICAGO – A new study presented at the American Society of Clinical Oncology (ASCO) Annual Meeting analysed demographic statistics from the National Cancer Database and identified multiple socio-economic factors, including private insurance, living in a regionally higher-income area and receiving treatment in certain practice settings as being associated with longer survival for mueloma patients. Furthermore, researchers found that neither race (black or white) nor gender had a significant impact on survival.

ASCO 2019 – Lenalidomide reduces risk that smoldering myeloma will progress to myeloma in high risk patients

  The phase II/III E3A06 randomized clinical trial found that lenalidomide (Revlimid) significantly reduces the risk of smoldering multiple myeloma (SMM) — a precancerous condition — from progressing to cancer in patients at moderate or high-risk. Organ damage is typically seen in myeloma, which is a way to differentiate it from SMM. At three years, in 87% (phase II) and 91% (phase III) of people with SMM receiving lenalidomide, the condition did not progress to…

Survey on myeloma patient information needs – UK patients required

  Myeloma Patients Europe (MPE) and Amgen are launching a survey for European myeloma patients to understand their information needs. If you are a myeloma patient living in the UK, who has received at least one prior treatment or are currently on your first treatment, MPE would be very grateful if you would take the time to complete the anonymous survey. The survey will be run in 12 European countries, however, at this stage we…

Lenalidomide and pomalidomide based triplet combination regimens for myeloma patients receives approval from the European Commission

The European Commission has approved two of Celgene’s IMiD ® -based combination regimens: Lenalidomide (Revlimid®) in combination with bortezomib and dexamethasone (RVd) in adult patients with previously untreated multiple myeloma who are not eligible for transplant Pomalidomide (Imnovid®) in combination with bortezomib and dexamethasone (PVd), in adult patients with multiple myeloma, who have received at least one prior treatment regimen including lenalidomide.

Advocacy sessions at EHA Annual Meeting 2019

  The European Hematology Association (EHA) celebrates its Annual Meeting in Amsterdam, from 13 to 16 June. This is the most important congress of haematology in Europe in which latest developments and cutting-edge research in haematological diseases will be discussed. Find more information about the congress here. For the first time, the session covering advocacy topics (both Patient Advocacy Track and EHA Advocacy Sessions) have been merged into the Joint EHA-Patient Symposium on Policy Challenges…

In Memoriam of Peter Lens

  It is with great sadness that we share that our friend and colleague, Peter Lens, has passed away. Peter was a myeloma patient and member of the first Board of Myeloma Patients Europe (MPE). He was always very passionate and supportive of MPE, its Board and staff.

Call to action for Central and Eastern European (CEE) members – join MPE CEE workgroup on access

Myeloma Patients Europe (MPE) has launched a Central and Eastern Europe (CEE) Workgroup on Access during our recent Annual General Meeting (AGM) in Munich, Germany. The Workgroup is chaired by MPE board members, Kristina Modic, also CEO of our Slovenian member Slovensko Združenje Bolnikov Z Limfomom In Levkemijo L&L, and Biba Dodeva, President of our Macedonian member BORKA. It was launched in response to an identified need for coordinated action at a European level on…

Results of MPE members participation in EMA survey on bortezomib

As bortezomib, an anti-myeloma medicine, is licensed as both an intravenous (IV – through the vein via a drip) and subcutaneous medicine (through the skin, via an injection), the European Medicines Agency (EMA) recently conducted a survey to understand which method was most commonly used across Europe. They also asked about the location of administration (i.e. at home or in hospital) for patients.

Myeloma Patients Europe webinar on CAR-T cell treatment

Patient advocates, patients and caregivers have heard a lot about CAR-T cell treatment and its potential in myeloma. However, there are still a lot of questions about its benefits, its challenges and its role in treating myeloma. With the aim of providing an overview of CAR-T cell treatment in myeloma, healthcare professional expectations and an introduction to some of the advantages and challenges for patients and in bringing it to market, Myeloma Patients Europe (MPE) will…

ESMO drives EU-level action to tackle shortages of essential medicines

Shortages of essential cancer medicines have a direct impact on patient care across Europe. To ensure that this issue remains a top priority on the EU policy agenda, the European Society for Medical Oncology (ESMO) collaborated with the European Parliament to organise a cross-partisan event entitled “Shortages of Inexpensive, Essential Medicines: Calling for Tangible Political Commitments in the EU”, according to a press release sent by ESMO today.

CARAMBA at the 1st European CAR-T Cell Meeting in Paris

The European Hematology Association (EHA) and European Society for Blood and Marrow Transplantation (EBMT) held the first European CAR T Cell Meeting together in Paris on February 14-16, 2019. Chimeric Antigen Receptor T-cell therapy (CAR-T) is revolutionizing the field of hematologic malignancies and has the potential to achieve cure for a number of dreadful diseases. The recent approvals of the first CAR T Cell treatments in Europe provide a great opportunity to fight hematologic malignancies,…

More than 800 myeloma samples have been recruited to the Horizon 2020 project, MMPredict

Myeloma Patients Europe (MPE) is participating in the Horizon 2020 project, MMPredict, aimed at developing a personalised medicine tool to predict the most effective treatment strategy for individual myeloma patients. The MMpredict consortium has reached a new milestone in this project by completing the recruitment of the patient samples required in this project. With more than 800 myeloma samples recruited, the project team meets its aimed target population. The current efforts will now be focused…

Open call to participate in the Advocate Development Programme (ADP)

Patient input into medical research is becoming increasingly important. The MPE Advocate Development Programme aims to help myeloma and AL amyloidosis advocates understand the research and development process of drugs, from the preclinical stages through to post-marketing surveillance and national access. Topics include clinical trial design, regulation, pricing and health technology assessment (HTA). The programme combines a series of theoretical sessions delivered by experts with practical sessions that take place during the most important myeloma…

ASH 2018 highlights in myeloma

Myeloma Patients Europe held a webinar to review the most recent myeloma findings presented at the annual meeting of the American Society of Hematology (ASH) that took place in San Diego (California, United States) in December 2018.

Horizon2020 MMPredict video on personalised medicine tools for myeloma patients now available in five languages

Myeloma Patients Europe (MPE) is participating in the Horizon 2020 project, MMPredict, aimed to develop a personalised medicine tool to predict the most effective treatment strategy for individual myeloma patients. To explain the main goals of MMPredict, MPE filmed a video with some partners working in the project consortium. Now this video, recorded in English, has been translated into four additional languages: German, Spanish, Dutch and Italian.

WECAN workgroup of patient advocates and industry experts releases guiding principles for reasonable legal agreements between patient advocates and pharmaceutical companies

A collaboration between patient advocates and pharmaceutical companies usually requires both parties to sign contracts for different engagements such as for advisory, consultancy, collaborative or speaker engagements. These contracts usually cover areas such as confidentiality, intellectual property, data protection, financial compensation and travel expenses. However, according to the Workgroup of European Cancer Patient Advocacy Networks (WECAN), most of these contracts may be difficult for patient advocates to understand or contain inadequate terms. Aiming to create…

Huge variations between countries in time for reimbursement decisions on new cancer drugs

European Society for Medical Oncology (ESMO), Munich (Germany) – Some European countries take more than twice as long as others to reach health technology assessment (HTA) decisions to reimburse new cancer drugs following their approval by the European Medicines Agency (EMA). The average decision time is longer than one year in some countries, according to a study presented at ESMO 2018 Congress.

Horizon2020 CARAMBA video on CAR-T cell therapy now available in five languages

At the recent European Haematology Association (EHA) Annual Congress 2018, Myeloma Patients Europe (MPE) and Video Journal of Hematological Oncology (VJHemOnc), filmed an interview with Dr Michael Hudecek (University of Würzburg, Germany) on the Horizon2020 CARAMBA project. The video was recorded in English and has now been translated into four additional languages: French, German, Spanish and Italian.

Daratumumab receive European license for use in newly diagnosed myeloma

Daratumumab (Darzalex®), an immunotherapy drug for the treatment of myeloma, has been granted marketing authorisation (e.g. a licence) by the European Commission. It is specifically licensed for use in combination with bortezomib (Velcade®), melphalan and prednisolone (D-VMP) in newly diagnosed myeloma patients who are ineligible for high-dose therapy and autologous stem cell transplantation.

Clinical challenges in myeloma

One of the challenges haematologists face in myeloma is how to treat frailer patients. Whilst the availability of proteasome inhibitors (PIs) (e.g. bortezomib [Velcade®], ixazomib [Ninlaro®] and carfilzomib [Kyprolis®]) and immunomodulatory agents (IMiDs) (e.g. thalidomide, lenalidomide [Revlimid®] and pomalidomide [Imnovid®]), have significantly improved the outcomes of myeloma patients in the last decade, frailer patients have shown a lesser improvement. This is mainly due to the toxicity some drugs can have in frailer patients, which may…

WECAN Survey on Fair Market Value

The contribution of patients and patient experts provides tangible value to other stakeholders and society that should be fairly compensated. Currently, there is no transparent and consistent system for financial compensation in place that reflects the level of individual contribution and expertise.

MPE launches Horizon2020 CARAMBA video on CAR-T cell therapy in myeloma

At the recent European Haematology Association (EHA) Annual Congress 2018, Myeloma Patients Europe (MPE) and Video Journal of Hematological Oncology (VJHemOnc), filmed an interview with Dr Michael Hudecek (University of Würzburg, Germany) on the Horizon2020 CARAMBA project. MPE is collaborating with a consortium of European partners, including the University of Würzburg, on CARAMBA which is studying an innovative new treatment called chimeric antigen receptor T-cell (CAR-T) therapy in myeloma. In this video, Michael explains CAR-T…

EHA 2018 highlights in myeloma

The most important scientific meeting about haematological diseases in Europe, the European Haematology Association (EHA) Annual Meeting, took place in Stockholm from 14 to 17 June 2018. Immunotherapy, CAR-T cell therapy and drug combinations were some of the key topics presented.

MPE will hold a webinar on EHA 2018 highlights in myeloma

Myeloma Patients Europe will hold an online webinar to review the most recent myeloma findings presented at the annual meeting of the European Hematology Association (EHA) that took place in Stockholm, Sweden in June 2018. The talk will be given by Dr Laurent Garderet, Department of Hematology, Saint Antoine Hospital, Paris, France.

Highlights from ASCO and EHA 2018

The Myeloma Patients Europe (MPE) team has been busy attending several important international conferences focusing on myeloma and AL amyloidosis. Main conferences attended were the American Society of Clinical Oncology (ASCO) Annual Meeting 2018 and the European Haematology Association (EHA) Annual Congress 2018. These large-scale meetings bring together oncology and haematology professionals from across the globe to discuss the latest scientific and treatment developments in the field. The scientific and patient advocacy highlights are outlined…

Prothena announces discontinuation of AL amyloidosis drug NEOD001

Prothena Corporation, a pharmaceutical company in neuroscience and orphan disease, has announced that it is discontinuing development of NEOD001, a drug being researched in clinical trials for the treatment of AL amyloidosis patients. The decision was taken because NEOD001 did not do as well as expected in its clinical development programme.

Plitidepsin receives second negative recommendation across Europe

Plitidepsin (Aplidin®), a new medicine for the treatment of relapsed and refractory myeloma, has today received a second negative recommendation from the Committee for Medicinal Products for Human Use (CHMP). This decision means that plitidepsin is very unlikely to made available to patients across Europe. This upholds a previous negative recommendation from the CHMP, which was reviewed following an appeal by the pharmaceutical company Pharma Mar.

Myeloma Patients Europe (MPE) joins project consortium looking at the role of innovative CAR-T immunotherapy in multiple myeloma

Today marks the official launch of a new international project consortium, known as “CARAMBA”, which will research an innovative immunotherapy for the treatment of multiple myeloma, known as Chimeric Antigen Receptor T-cell therapy (CAR-T). Through strategic collaboration with a wide-range of stakeholders, the consortium aims to ensure the streamlined transition of CAR-T from the laboratory through to multiple myeloma patients in the clinic.

Open call for members to participate in patient information pilot (deadline Mon 12 February)

MPE is inviting members to express their interest in participating in a small pilot on patient information for newly diagnosed myeloma patients. As part of this pilot, MPE will be adapting and translating an Infopack for newly diagnosed patients (created by Myeloma UK) for use in small group of European countries. The Infopack provides information that patients may need to know following the diagnosis of myeloma and provides practical tips.

MPE will hold a webinar on ASH 2017 highlights in myeloma

Myeloma Patients Europe will hold an online webinar to review the most recent myeloma findings presented at the annual meeting of the American Society of Hematology (ASH) that took place in San Diego (California, United States) in December 2017. The talk will be given by Dr María Victoria Mateos, Associate Professor of Hematology and Consultant. Physician of the Haematology Department at the University Hospital of Salamanca, Spain.

Myeloma Patients Europe urges CHMP committee to approve plitidepsin for relapsed myeloma

Myeloma Patients Europe (MPE) has written to the Chair of the Committee for Human Medicinal Products for Human Use (CHMP) within the European Medicines Agency (EMA) to provide the patient viewpoint on the importance of plitidepsin (Aplidin®) for relapsed and refractory myeloma patients across Europe. We have outlined how important it is for patients across Europe to gain access to effective drugs that have new mechanisms of action.

Webinar “Science in patient advocacy”

As part of the Advocate Development Programme (ADP), MPE is organising an online webinar about science in patient advocacy. Although the webinars held within the ADP are usually open only to our ADP trainees, on this occasion we would like to invite to the webinar all our members and patient advocates interested in science. The webinar “Science in patient advocacy” will be given by Bettina Ryll, chair of the ESMO Patient Advocates Working Group (PAWG)…

ASH Annual Meeting 2017 is about to start

The 59th American Society of Hematology (ASH) Annual Meeting will take place from 9 – 12 December in Atlanta, Georgia, United States (US). Myeloma Patients Europe (MPE) will be attending the meeting, alongside thousands of leading doctors, researchers and patient advocates in the field of blood cancer (hematology). Below we explain ASH and the importance of the meeting to patient advocates.  

Update on European melphalan shortages

Melphalan (Alkeran®), a chemotherapy drug commonly used in myeloma, was not available in several European countries towards the end of 2016. Myeloma Patients Europe (MPE) became aware of the situation following reports from our members that it was impacting negatively on myeloma patients in their countries. We conducted a survey to explore the issue further, the results of which you can see here.

CAREFOR calls on EU to safeguard independent academic research

Lugano/Brussels, 3 August 2017. Three leading European organisations in the fight against cancer have called the European Union (EU) to urgently increase its support for independent academic research for the benefit of cancer patients, in an article published (today) in ESMO Open. “Independent academic research is endangered for lack of funds and adequate legislation,” said Rolf A. Stahel, ESMO Past President and co-founder of the CAREFOR platform. “Working closely with EU institutions, we can make sure…

In Memoriam of Jelle Palsma

It is with great sadness that we share with you that our friend and colleague, Jelle Palsma passed away. Jelle was part of the board of MPE’s French member, Association Française des Malades du Myélome Multiple (AF3M), and was a very active representative at MPE. Despite his health condition, Jelle was involved in highly relevant MPE initiatives with a remarkable positive attitude.

Myeloma highlights at EHA 2017

The most important Haematology scientific meeting in Europe, the European Hematology Association (EHA) Annual Meeting was held between 22 and 25 June 2017 in Madrid (Spain).

Promising results of CAR T-Cell therapy in myeloma patients

53rd Annual Meeting of the American Society of Clinical Oncology (ASCO) CHICAGO – In an early clinical trial, 33 out of 35 (94%) patients had clinical remission of myeloma upon receiving a new type of immunotherapy  ̶  chimeric antigen receptor (CAR) T cells targeting B-cell maturation protein or BCMA. Most patients had only mild side effects. The study was presented at the 2017 American Society of Clinical Oncology (ASCO) Annual Meeting. “Although recent advances in chemotherapy have prolonged life expectancy in multiple myeloma, this cancer remains incurable,” said study author Wanhong Zhao, MD, PhD,…

Denosumab delays the time to first skeletal-related event in patients with myeloma

53rd Annual Meeting of the American Society of Clinical Oncology (ASCO) Chicago – According to Phase 3 ‘482 study, the largest international multiple myeloma trial ever conducted with 1,718 patients involved, patients who receive denosumab (XGEVA) had a significantly lower rate of renal adverse events compared to zoledronic acid (10.0 percent versus 17.1 percent, p<0.001). The study met its primary endpoint, demonstrating denosumab is non-inferior to zoledronic acid in delaying the time to first on-study…

Psychological intervention lowers survivors’ fear of cancer recurrence

53rd Annual Meeting of the American Society of Clinical Oncology (ASCO) June, 2, 2017 CHICAGO – About 50% of all cancer survivors report moderate to high fear of recurrence. The fear can be so distressing that it negatively affects medical follow-up behavior, mood, relationships, work, goal setting, and quality of life, according to a study presented during the 53rd American Society of Clinical Oncology (ASCO) Annual Meeting taking place June 2-6 in Chicago. Yet, interventions to alleviate this…

In Memoriam of Yacob Yacobovitch

We all were saddened to hear of our recent loss of Yacob Yacobovitch, who passed away on the 18th of april 2017. Yacob Yacobovitch was member of Myeloma Patients Europe from 2012 until 2016.

MPE Advocate Development Programme (ADP)

The MPE Advocate Development Programme (ADP) is a training programme directed to MPE members with the aim to provide them with the skills and knowledge that any myeloma patient advocate should have regarding the drug development process. The main goal of MPE is to put medicines research into a myeloma context and create a tailored training programme for the myeloma community.

Mayo Clinic researchers identify therapy that shrinks tumors in patients with myeloma

PHOENIX – Mayo Clinic researchers have found that an experimental drug, LCL161, stimulates the immune system, leading to tumor shrinkage in patients affected by myeloma. The findings are published in Nature Medicine. Myeloma is a blood cancer that affects plasma cells – white blood cells that normally produce antibodies to fight infection. Rather than produce helpful antibodies, the cancer cells, as they grow, secrete large amounts of a single antibody that accumulate in the body,…

In Memoriam of Mika Peltovaara

It is with great sadness that we share with you that our friend, colleague and Board member Mika Peltovaara (23 Dec 1965 – 21 Febr 2017) passed away in the morning of the 21th of February 2017. Mika was board member of Myeloma Patients Europe since 2014. He was a very experienced, long-serving patient advocate for the Finnish Cancer Patient Association, with a special interest in possibilities of social media and new technologies in connecting…

Most of the contracts between pharma and patient organisations are difficult to understand and contain unreasonable clauses

The contracts provided to patient advocates are often too long, difficult to understand for patient advocates, contain ambiguous clauses, contain terms that are in conflict with the very nature of patient advocacy, or even put the signing patient advocate at legal risk. That is what a survey run by the pan-European patient advocacy network Myeloma Patients Europe (MPE), and further supported by a network of 21 pan-European cancer patient advocacy organisations (WECAN) from other disease…

Delays in access to new cancer medicines and unjustifiable price rises for old ones disadvantage patients unnecessarily

Amsterdam, The Netherlands. Cancer patients are living longer and in many cases the disease is becoming chronic rather than acute. Access to drugs that help extend life and improve quality of life, and fair prices for those drugs are therefore essential for more and more people. But patients are badly served in this respect, with delays in the availability of new treatments and incomprehensible price rises for well-established therapies, including generics, according to the data…

IMI’s ADAPT SMART Kick-Starts 2017 by putting stakeholders at the centre

London, January 18, 2017.- ADAPT SMART’s General Assembly, held at the European Medicines Agency (EMA), agrees to focus its final year on incorporating stakeholder feedback into the development of Medicines Adaptive Pathways to Patients (MAPPs) tools and methodologies. Myeloma Patients Europe (MPE) was attending this meeting. With growing international interest and visibility in the final year of the consortium, ADAPT SMART members have agreed to redouble their efforts to collaborate with key stakeholder groups and…

Patients and cancer experts launch a joint vision for improving cancer outcomes in Europe

A coalition of 60 patient advocates, healthcare professionals and scientists (including 3 Nobel Prize winners) from 20 European countries have come together to publish a blueprint for improving cancer outcomes and achieving better quality of life for cancer survivors throughout Europe.1 They are members of the European Cancer Concord (ECC®), an equal partnership between patients and cancer experts which launched the European Cancer Patient’s Bill of Rights on World Cancer Day 2014 in the European…

MPE will hold a webinar on ASH 2016 Highlights in myeloma

Myeloma Patients Europe will hold an online webinar to review the most recent myeloma findings presented at the annual meeting of the American Society of Hematology (ASH) that took place in San Diego (California, United States) in December 2016. The talk will be given by Dr Laurent Garderet, Department of Hematology, Saint Antoine Hospital, Paris, France.

Innovative Medicines Initiative (IMI) approves € 40 million project for better care of patients with haematologic malignancies

Brussels/Salamanca, January 9, 2017. The Innovative Medicines Initiative (IMI) has approved HARMONY, a project that aims to foster better access and care for patients with various hematologic malignancies (HM) with the use of big data. The project is made up of 51 partners from 11 European countries, including 7 pharmaceutical companies. Other organisations such as Myeloma Patients Europe (MPE), Lynphoma Coalition, MSD Alliance or CLL Advocate will be involved in this project as well in…

Depressed patients are less responsive to chemotherapy

ESMO.- A brain-boosting protein plays an important role in how well people respond to chemotherapy. This is what reveals a study presented at the European Society for Medical Oncology (ESMO) Asia 2016 Congress in Singapore. According to this research, cancer patients suffering depression have decreased amounts of brain-derived neurotrophic factor (BDNF) in their blood. Low levels make people less responsive to cancer drugs and less tolerant of their side-effects.

MPE’s Atlas Coaching Programme pilot begins

Based on the findings of the European Atlas of Access to Myeloma Treatment, Myeloma Patients Europe’s Atlas Coaching Programme is an opportunity for MPE members to identify priorities and build successful advocacy strategies to improve access to myeloma treatments in every country in Europe.

Addition of daratumumab to bortezomib and dexamethasone in patients with relapsed or refractory shows promising results in a phase III trial

At the ESMO 2016 Congress held in Copenhagen between 7th-11th October, Dr Katja Weissel, from the Haematology and Oncology Department of Medicine at University Hospital Tuebingen (Germany), presented the results of the CASTOR study, a phase III randomised controlled study of daratumumab, bortezomib and dexamethasone (DVd) compared with bortezomib and dexamethasone (Vd) in patients with relapsed or refractory myeloma.

Webinar on current myeloma diagnosis guidelines and techniques

Myeloma Patients Europe will hold an online webinar to provide an updated about the current myeloma diagnosis guidelines as well as a review of the current diagnosis techniques. The talk will be given by Dr Guy Pratt, Honorary Consultant Haematologist at the Heart of England NHS Foundation Trust and Senior Lecturer in Haematology in the Institute of Immunology and Immunotherapy, University of Birmingham.

MPE encourages EMA to review its negative recommendation for ixazomib

Myeloma Patients Europe (MPE), in close collaboration with Myeloma UK, and along with almost 30 member and non-member associations across Europe, has submitted a letter to the Committee for Human Medicinal Products (CHMP) within the European Medicines Agency (EMA) to encourage them to reconsider the negative recommendation for ixazomib, and provide information to the appeal of their decision on ixazomib.

MPE to hold the “EHA 2016 Highlights in myeloma” webinar on 14th July

Myeloma Patients Europe will hold an online webinar to review the most relevant myeloma updates presented at the annual meeting of the European Hematology Association that took place in Copenhagen in June 2016. The talk will be given by Dr María Victoria Mateos, PhD. Director of the Myeloma Unit University Hospital of Salamanca-IBSAL Salamanca, Spain

MPE becomes a member of the Patients’ and Consumers’ Working Party

MPE is very proud to have been accepted as member of the Patients’ and Consumers’ Working Party (PCWP) at the European Medicines Agency for the term 2016-2019. The PCWP provides a platform for exchange of information and discussion of issues of common interest between the EMA and patients and consumers. It was established in 2006, and has enabled the Agency to build upon its existing interactions with patients and consumers. It provides recommendations to the…

CHMP has expressed a negative opinion for ixazomib

Ixazomib (Ninlaro) has received a negative recommendation from the Committee for Human Medicinal Products (CHMP) within the European Medicines Agency. The CHMP is responsible for developing recommendations for the European Commission on new medicines going through the European marketing authorisation process. It assesses and makes recommendations on whether a drug is safe and effective enough to be granted a marketing authorisation for use across the European Union. Usually the European Commission follows the advice of…

Statement from MPE on the court case it has taken against its former treasurer Ms Begoña Barragán

STATEMENT FROM MYELOMA PATIENTS EUROPE on the court case it has taken against its former treasurer Ms Begoña Barragán Brussels, Belgium – Friday May 20th 2016 Myeloma Patients Europe (MPE) believes it has been defrauded by its former Treasurer Ms Begoña Barragán who, between 2013 and 2014, carried out four unauthorised transfers of money from MPE’s bank account to the Spanish organisations AEAL and Fundaseth, which were under her control and responsibility. In total Ms…

What is Minual Residual Disease (MRD) and how it can be monitored?

New trends in Multiple Myeloma management is to look for the few amounts of cancer cells that might remain in your bone marrow. These residual cells are responsible of the disease relapse. Myeloma Patients Europe will hold an online webinar on Minimal Residual Disease (MRD) that will highlight the importance of this monitoring method and will detail new highly sensitive techniques used to investigate it.

EMA recommends market authorisation for elotuzumab

Elotuzumab receives a positive Committee for Medicinal Products for Human Use (CHMP) opinion for the treatment of multiple myeloma patients who have receive at least one prior therapy. The reccommensation is based in the results of a randomised open-label Phase 3 study evaluating the use of elotuzumab in combination with lenalidomide and dexamethasone versus lenalidomide and dexamethashone alone. The results show that myeloma progresses more slowly on those patients who took elotuzumab compared to those…

Committee for Orphan Medical Products invitation to myeloma patients

The European Medicines Agency is currently inviting one or two myeloma patients to participate in a discussion and oral explanation about a potential medicine to treat the disease during the COMP meeting in January (Committee for Orphan Medical Products). The discussions relates to an orphan designation for a potential drug to treat multiple myeloma and the patients designated will be able to contribute from a patient perspective.

Job offer – Finance administrator

MPE is looking for a finance administrator. Apply for this job offer by sending motivation letter and CV to Ananda Plate by 28 April 2016.

“How is my Multiple Myeloma diagnosed?” webinar

Myeloma Patients Europe will hold an online webinar covering the major advances that have occured in understanding the biology of multiple myeloma and the current approach to its diagnosis based on the latest international guidelines, as well as the benefits of early testing in this pathology.

EHA 2015 Patient Advocacy track presentations now available

Patient Advocacy sessions were again an integral part of EHA’s annual congress program! PDFs of all three patient advocacy sessions are now available. Click on the respective presentation to download the slides. We would like to thank CML Advocates Network for putting all together this information and circulating across all the involved groups.

EHA 2015 Highlights webinar on 6th July

Myeloma Patients Europe will hold an online webinar to review the most recent myeloma findings presented at the annual meeting of the European Hematology Association that took place in Vienna in June 2014.

Creating your Business Plan Workshop

Where is your patient group? Where do you want to get to? How you will get there? Patient organisations usually find several issues when trying to achieve their objectives due to limitations in terms of resources, time or strategy. However, some other are able so overcome these barriers and succeed in their mission. So how are they able to make it? The answer is simple: they have a plan.

Smoldering myeloma webinar on 13th April

Myeloma Patients Europe will hold an online webinar on smoldering myeloma and the latest updates in its field of research. The talk will be given by Dr Jens Hillengaß, Haematology and Oncology Deparmtment at the University of Heidelberg (Germany) and Dr Maria Victoria Mateos, Haematology Department at the University Hospital of Salamanca (Spain)

MPE to be present at the 56th ASH Annual Meeting

Myeloma Patients Europe will be present at the 56th American Society of Hematology Annual Meeting, to be held in San Francisco betweeb 6 and 9 December. Over 20.000 people from all arround the globe will attend the largest hematology event in the world. Hundreds of sessions, posters and exhibits will bring together, not only hematologists, but also other stakeholders, such as non-clinical researchers, nurses, industry and, of course, patients.

European Atlas on Access to Myeloma Treatment survey

Myeloma Patients Europe is currently developing a European Atlas of Access to Myeloma Treatment. Access to treatment across Europe is extremely variable. Patient group advocacy can make a huge difference in improving access, but often doesn’t have the evidence, knowledge and tools to advocate effectively.

European Perspective on Multiple Myeloma Treatment Strategies in 2014

Authors: Heinz Ludwig, Pieter Sonneveld, Faith Davies, Joan Bladé, Mario Boccadoro, Michele Cavo, Gareth Morgan, Javier de la Rubia, Michel Delforge, Meletios Dimopoulos, Hermann Einsele, Thierry Facon, Hartmut Goldschmidt, Philippe Moreau, Hareth Nahi, Torben Plesner, Jesús San-Miguel, Roman Hajek, Pia Sondergeld and Antonio Palumbo. The treatment of multiple myeloma has undergone significant changes and has resulted in the achievement of molecular remissions,the prolongationof remission duration,and extended survival becoming realistic goals, with a cure being possible…

Come and visit us at ESMO!

For yet another year, Myeloma Patients Europe will be present at the European Society for Medical Oncology Congress. The event will take place in Madrid between the 26 to 30 of September. The main congress of European Oncology is expected to meet over 16.000 attendees from over 120 countries. ESMO 2014 intends to merge state-of-the-art oncology with the latest breakthrough discoveries, from cost-effective anti-cancer treatments to best supportive care.

The latest issue of the MPE Member Update is out

The MPE Member Update is a bi-monthly summary of the activities undertaken by MPE members. It inlcudes updates on the projects and activities they have been involved in over the last two month and their plans for the nearer future. The September issue of the MPE Member Update has just been published. To check the updates by member group, please click here. If you wish to subscribe to the MPE Member Update or the MPE…

Article on cancer and depression

Integrated collaborative care for comorbid major depression in patients with cancer (SMaRT Oncology-2): a multicentre randomised controlled eff ectiveness trial for the SMaRT (Symptom Management Research Trials) Oncology-2 Michael Sharpe, Jane Walker, Christian Holm Hansen, Paul Martin, Stefan Symeonides, Charlie Gourley, Lucy Wall, David Weller, Gordon Murray,

Top-line results from phase 3 focus trial of Kyrpolis®

AMGEN ANNOUNCES TOP-LINE RESULTS FROM Phase 3 FOCUS TRIAL of KYPROLIS® IN PATIENTS WITH RELAPSED AND ADVANCED REFRACTORY MULTIPLE MYELOMA THOUSAND OAKS, Calif. and SOUTH SAN FRANCISCO, Calif. (Aug. 13, 2014) – Amgen (NASDAQ:AMGN) and its subsidiary, Onyx Pharmaceuticals, Inc., today announced that the Phase 3 clinical trial FOCUS (CarFilzOmib for AdvanCed Refractory MUltiple Myeloma European Study) did not meet its primary endpoint of improving overall survival (OS) (HR=0.975, 95 percent CI, 0.760, 1.249). The…

Launch of the European Cancer Patient’s Bill of Rights

The European Cancer Patient’s Bill of Rights will be launched at the European Parliament in Strasbourg on 4 February 2014, coinciding with the World Cancer Day. The launch is hosted by the European Cancer Concord (ECC) and European Cancer Patient Coalition (ECPC) in association with the Members of the European Parliament Against Cancer (MAC) Group.

World Cancer Report 2014

Edited by Bernard W. Stewart and Christopher P. Wild This book from the International Agency for Research on Cancer, the specialized cancer agency of the World Health Organization, provides a unique global view of cancer, including cancer patterns, causes, and prevention. The World Cancer Report series is recognized as an authoritative source of global perspective and information on cancer. The first volume appeared in 2003 and the second in 2008. This third volume in the…

Eurocare 5 Results

EUROCARE 5 results where presented at the European Parliament on 5 December 2013. Some of the conclusions were: • The number of adults survive at least 5 years after diagnosis has increased steadily over time in all regions of Europe from 1999 to 2007 , BUT STILL cancer survival varies widely between European countries.

EHA survey on unavailability of medicines

A website survey where doctors, patients and healthcare professionals can report unavailability of medicines has been developed. Over the course of (at least) the following months, these reports will be collected and analysed so that we can develop a coherent picture of the scope, causes and consequences of these problems in Europe. At the moment such an overview does not exist which makes it difficult for European politicians and policy makers to take measures that…

Lithuanian Presidency to start negotiations on clinical trials regulation

The Committee of Permanent Representatives (COREPER I) mandated the Lithuanian Presidency to enter into negotiations with the European Parliament and the Commission with the aim to reach an agreement at first reading on the Proposal for a Regulation on Clinical trials on medicinal products for human use, which aims to facilitate the conduct of clinical trials and thus increase their number in the EU, which could result in better treatment of patients.

Amendments to the pharmacovigilance legislation: new notification requirements for marketing-authorisation holders and changes to scope of European safety referrals

Amendments of the European Union (EU) pharmacovigilance legislation that were adopted in October 2012 came into force on Monday 28 October 2013. These changes, which cover various aspects of the legislation, aim to further strengthen the protection of patient health by increasing the ability of the European medicines network to take prompt and appropriate regulatory action.

Pomalidomide approved for use across Europe

Pomalidomide (Pomalidomide Celgene®) has been granted a licence for use in myeloma patients across Europe. This decision by the European Commission follows the positive recommendation in May 2013 for pomalidomide by the Committee for Medicinal Products for Human Use (CHMP), within the European Medicines Agency (EMA).

Two new indications of Velcade® approved for use across Europe

The European Commission granted a licence for the use of two new indications of Velcade® (bortezomib) in the treatment of myeloma. It has approved its use as an induction treatment for newly diagnosed patients prior to high-dose therapy and autologous stem cell transplantation and as a retreatment in relapsed myeloma patients (in combination with thalidomide and dexamethasone) who have previously responded well to Velcade®.

Phase III Study (MM-020/IFM 07-01) of Oral REVLIMID® (Lenalidomide) in Newly-Diagnosed Multiple Myeloma Meets Primary Endpoint

Statistically significant improvement in progression-free survival demonstrated On Thursday 11 July 2013, Celgene International Sàrl announced that its phase III study (MM-020/IFM 07-01) of REVLIMID® (lenalidomide) in combination with dexamethasone in patients newly diagnosed with multiple myeloma met its primary endpoint of progression-free survival (PFS). In the study, a doublet regimen of continuous oral lenalidomide in combination with low-dose dexamethasone (Rd) demonstrated a statistically significant improvement in PFS compared to patients receiving a comparator arm…

Public Launch: MPE report on Myeloma Patients Perspectives (14 June 2013)

We are delighted to anounce that the MPE report on Myeloma Patient Perspectives is being launched today, Friday 14 June 2013. Printed copies are available at EHA 2013 in Stockholm. Please feel free to pick up a copy at the EHA MPE booth (table top C14:11) from 14-16 June 2013. For more information on these report, please send an email to

MPE at EHA (Stockholm 13-16 June 2013)

MPE will be represented by several delegates at the 18th EHA congress in Stockholm (13-16 June 2013). We also have a booth where printed versions of our key documents and recent publications will be provided, such as the MPE report on Myeloma Patient Perspectives, the executive summary of the report, a summary of our strategic plan 2013-2018 and the Clinical Trial Charter developed by MPE.

CHMP positive opinion on Pomalidomide

The Committee for Medicinal Products for Human Use (CHMP) within the European Medicines Agency (EMA) has adopted a positive opinion, recommending the granting of a marketing authorisation for Pomalidomide (Pomalidomide Celgene®) in the treatment of multiple myeloma for relapsed and refractory myeloma patients. The next step is for the European Commission to adopt the final licensing decision within three months. There is no doubt that this is a crucial step for patients within the EU…

II Masterclass on personalized medicine in multiple myeloma

Madrid, Saturday 13 April 2013 (9:00am – 4:30pm)   After the success of MPe’s I Masterclass that took place in Edinburgh last year, the second one will follow this spring focusing on myeloma genetics and the role of bio banks. The issue will be presented and discussed from a medical point of view, but also from the patient perspective, particularly concerning the ethical issues involved in these kind of treatments.

Aeterna Zentaris stops Phase III perifosine study

On the 12 March Aeterna Zentaris announced the discontinuation of their Phase III myeloma study of perifosine subsequent to a recommendation by the Data Safety Monitoring Board (DSMB). According to the DSMB, the pre-planned interim analysis of efficacy and safety indicates that the study may not reach the significant difference in progression free survival, the primary endpoint.

European Bone Marrow Transplant (EBMT) Patient and Family Day – Sat 6 April 2013

As part of the European Bone Marrow Transplant (EBMT) group’s annual conference, there will be a Patient and Family Day on Saturday 6 April 2013. The EBMT Annual Meeting is the most important annual event for research and education in the field of bone marrow transplantation in Europe and during the conference a special Patient and Family Day will be held for patients who have undergone a bone marrow transplant and their families.

Trade name for pomalidomide revealed

Celgene Corporation has proposed that ‘Pomalyst’ will be the new brand name for its drug, pomalidomide. The announcement comes ahead of the US Food and Drug Administration (FDA) and the European Medicines Agency’s (EMA) review of the company’s application to approve pomalidomide as a new treatment for relapsed and refractory myeloma patients.

Increased risk of myeloma in World Trade Center rescue workers

The results of the latest in a number of studies suggest that the people involved in the rescue and recovery operation following the September 11 attack at the World Trade Center are at an increased risk of developing myeloma and other cancers. Published in the December 2012 issue of the prestigious Journal of the American Medical Association, the study involved an analysis of the information collected from 55,778 people enrolled in the World Trade Center…

Study shows a decline in physical activity after myeloma diagnosis

An Australian study published in the journal Supportive Care in Cancer has revealed that levels of physical activity decline after patients are diagnosed with myeloma. The research surveyed 229 myeloma patients and found that participation in physical activity declined significantly from pre-diagnosis levels. Fatigue, injuries and pain were identified as the strongest perceived barriers to taking part. However, 41% of patients were willing to try an exercise programme if one was offered to them.

Pomalidomide shows survival benefit for myeloma patients

The latest results from an international Phase III clinical study, show that pomalidomide with low-dose dexamethasone improves the length of remission and extends overall survival in relapsed and refractory myeloma patients. Pomalidomide, an immunomodulatory drug (IMiD) similar to Revlimid® and derived from thalidomide, is being developed by the pharmaceutical company Celgene as a potential treatment in myeloma.

Subcutaneous Velcade® approved for use across Europe

MPE has welcomed the news today that the European Commission has approved a marketing licence for Velcade to be used as a subcutaneous (under the skin) injection for myeloma patients. Velcade was the first in a class of anti-cancer drugs called proteasome inhibitors to be used in myeloma. It was first licensed in Europe in an IV formulation and since then Velcade has had a significant impact on the treatment of myeloma.

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