News Archives - Myeloma Patients Europe

Supporting those who care: Introducing the MPE Care Connect Programme

Adam Davenport — Thu, 25 Jun 2026 09:50:38 +0000

Myeloma Patients Europe (MPE) is proud to announce the launch of the Care Connect Programme, a new initiative dedicated to strengthening support for carers of people living with myeloma and AL amyloidosis across Europe.

Carers play a vital role in the lives of patients, providing emotional support, practical assistance, care coordination, and advocacy throughout the myeloma pathway. However, feedback from MPE member organisations has highlighted a significant need for more educational resources, organisational support, peer-to-peer connection and recognition for carers at both national and European levels.

MPE’s strategic goals 2025 – 2030 set out our clear commitment to “identify and address the needs of carers.” As part of this commitment, the Care Connect Programme will:

Support the development of national carer initiatives

Launch the Care Connect Grants Programme for MPE members – now open for applications

Develop dedicated information resources for carers

Advance carer-focused research

Strengthen policy and advocacy efforts for carers in Europe

“We as carers or advocates for our loved ones must always keep in mind that we are accompanying someone on a long and complex road ahead and it is important to maintain and sustain our wellbeing and quality of life to be able to improve comfort and quality of life for our loved ones,” said MPE Vice President of the Board and Carer, Diane Loening-Martens.

Diane also highlighted the sudden change in roles that accompanies a diagnosis.

“A myeloma diagnosis is a life altering event. From the moment of diagnosis, the future expectations, daily routines and relationship dynamics of both the person who has just received the diagnosis and their loved ones shift completely,” she said. “Maybe partners or family members don’t call themselves carers, but in fact if they are giving emotional, physical and psychological support to their loved one, they are playing the role of a carer, supporter or companion.” 

Through the Care Connect Programme, MPE aims to build stronger support systems for carers, facilitate knowledge sharing between organisations and ensure that carers are recognised as essential partners in healthcare.

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MPE AGM Welcome to our newest members and congratulations to our newly elected board

Adam Davenport — Tue, 31 Mar 2026 12:31:55 +0000

At the MPE Annual General Meeting on Tuesday, 31 March, we were pleased to welcome four new member organisations into the MPE community and to confirm the results of our board elections. Together, they represent the continued growth and diversity of the myeloma and amyloidosis patient community across Europe.

New members

Hellenic Multiple Myeloma Patient and Friends Association, Greece: Founded to strengthen the patient voice within the Greek healthcare system, the association runs programmes spanning awareness, psychosocial support and access advocacy. Chaired by Nikoletta Telioridou.

Multiple Myeloma and Amyloidosis Group (MMAG), Malta: MMAG works to unify and support people living with myeloma and amyloidosis in Malta, advocating for timely diagnosis, treatment access and greater public awareness. Chaired by Lara Said.

Asociación de Pacientes con Amiloidosis (ASPACAM), Spain: ASPACAM supports people living with all types of amyloidosis in Spain, providing information, advocacy and psychosocial support, while working to improve diagnosis and treatment nationally. Chaired by Concha Alcaide.

VFKMMMPA, Germany: Dedicated to fostering connections between people with multiple myeloma and their families, VFKMMMPA focuses on community, information and emotional well-being. Chaired by Peter Steinbuck.

Board elections

Members also voted on the Board of Directors at the AGM. Re-elected for another term were Zvi Zilberman, Barbara Leonardi, Snezana Doder, Vincent Claus, Diane Loening-Martens and Kristina Modic. We also warmly welcome two newly elected board members: Eric Battini (AF3M, France) and Riikka-Leena Manninen (Finland). We look forward to the new Board’s strategic guidance and championing of MPE’s vision, mission and values.

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Highlights from the Myeloma Cure Summit

Adam Davenport — Wed, 25 Feb 2026 15:52:45 +0000

Myeloma has always been an incurable cancer which is becoming increasingly chronic with treatment advances and access. Whilst the community remains cautious talking about myeloma as a curable cancer there is optimism amongst industry experts.
The Myeloma Cure Summit was an event organised by the International Myeloma Society in Miami, Florida, USA from 20 – 21 February 2026. The meeting was attended by myeloma specialists from around the world, as well as more than 1,000 online attendees, to discuss, debate and begin to reach consensus on defining a cure in myeloma. The meeting included sessions on long-term follow-up studies, where some patients had very long remissions, patients who might be curable, lessons from other cancer areas, the potential therapies that might lead to a cure, and more. 

Why are we talking about a cure in myeloma? 

Dr. Sagar Lonial, Emory University Cancer Center said: “We have never been in a better position to talk about the topic today, than we are right now. There is a fundamental difference in our field now than 10 years ago, 20 years ago.” 

The myeloma treatment landscape has changed dramatically over the last 20–25 years leading to improved survival rates. Targeted therapies like proteasome inhibitors (like bortezomib and carfilzomib), immunomodulatory drugs (like lenalidomide and pomalidomide) and monoclonal antibodies (like daratumumab and isatuximab) have transformed care. More recently, immunotherapies like CAR T-cell therapies and bispecific antibodies have shown unprecedented response rates, including in heavily pretreated patients. Today, for many patients myeloma is a long-term manageable condition, and some patients are living so long without relapse that talking about cure becomes possible.

Can we currently cure myeloma?

It depends on how we define cure. Myeloma is a cancer that evolves over time and can develop treatment resistance. Whilst patients have long remissions, even if myeloma cells are undetectable (with sensitive tests such as minimal residual disease [MRD] testing), it does not mean they have been completely eradicated and that myeloma will never come back. Very late relapses can still occur. There are documented cases of relapse after long remissions (after 10 or even 20 years). Moreover, many patients will remain on continued treatment, which often comes with side-effects and impacts on quality of life. If disease control depends on treatment, can this be defined as a cure? Some physicians also prefer using the term “functional cure” with the disease being still biologically present at some microscopic level, but no longer causing symptoms or disease progression, nor impacting life expectancy. They consider the patient to be in a prolonged remission.

Currently, if some patients might be cured and survival keeps improving, it is not the case for many patients. Talking about cure might raise false hopes and physicians are very cautious about using the term “cure”. Additionally, even “cured” patients might remain at high risk from infection and therefore need long-term supportive care to manage it.

How are the experts potentially defining a cure in myeloma?

During the meeting, a consensus was reached and a definition of a myeloma cure was proposed. It was defined as patients who are in complete and sustained remission and are MRD negative (meaning no myeloma cell is detected in a sample of 1 million cells), confirmed by functional imaging like PET/CT scans or MRI, for a continuous period of 5 years, without any treatment.

Which patients could potentially be cured?

Considering the proposed definition of a cure, experts think a fraction (i.e. proportion) of patients (5 to 30%) are currently cured. This “cure fraction” varies depending on the type of treatment, patients’ age (advancing age was associated with lower cure fraction) and disease risk (higher risk disease might be associated with lower cure fraction). These numbers are obtained with treatments used 10 years ago. Experts predict higher numbers with current treatments.

What treatments might help a cure? 

Experts presented different strategies that may lead to a cure. For example, using different existing treatments in a sequential manner to attack myeloma in different ways without causing drug resistance, using T-cell engaging therapies (or optimized version of them) like CAR T-cell therapies or bispecific antibody combinations, and using most efficient treatments as early as possible.

How is the patient voice being considered in the definition of cure?

A session of the meeting was dedicated to hearing patient voices. Dr. Vania Hungria, who works with the International Myeloma Foundation (IMF) in Latin America, stressed that the patient definition of a cure is not the same as the physician’s. She insisted that patients value being able to return to normal life, free from constant uncertainty, and able to move forward without the disease dominating their daily thoughts. She presented the results from a survey conducted on behalf of the IMF and the Grupo Brasileiro de Mieloma (myeloma patient group in Brazil) online from 11-15 February 2026. 267 Brazilian myeloma patients answered the survey which confirmed the importance of stopping treatment and not worrying about relapse. Two US patients now in long-term remission and considering themselves cured also shared on stage their diagnosis and treatment stories and answered questions from physicians. They presented their own definition of a cure: being well, having a normal life again, without treatment, and not dealing with side-effects.

What are the next steps?

Increasing the cure fraction will rely on improving access to novel therapies and their availability to large numbers of patients, optimising efficacy and safety (especially related to infection risk) of existing and new treatments and establishing fixed treatment durations. The definition of cure is expected to evolve.

The full content of the consensus will be soon published by the organisers of the meeting in a peer-reviewed article.

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The European Commission grants final authorisation for belantamab mafodotin (Blenrep®) combinations for relapsed/refractory myeloma patients

Adam Davenport — Fri, 25 Jul 2025 06:45:41 +0000

Two belantamab mafodotin (Blenrep®) combinations, with bortezomib and dexamethasone or pomalidomide and dexamethasone, are now authorised for use in the European Union.

The decision follows an earlier positive recommendation of European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP – their scientific advisory committee) on 23 May 2025.

Marketing authorisation means that belantamab mafodotin is safe and effective for use in relapsed myeloma patients. However, it should be noted that national patient access will further depend on the company’s marketing decisions and on national healthcare system assessments and approvals.

The two phase III clinical trials (i.e., large studies comparing different treatments in patients) on which these approvals are based on are called DREAMM-7 and DREAMM-8. Both clinical trials found that belantamab mafadotin, when given in combination with existing myeloma drugs, extended the length of time myeloma patients had without their disease getting worse when compared to a standard of care (i.e., what patients might currently receive when they relapse).

Kate Morgan, co-CEO of Myeloma Patients Europe says about this approval:

“Myeloma is a complex cancer and the more treatments we have, including new mechanisms of action such as belantamab mafodotin, the more effectively we are able to treat it. This drug shows a significant anti-myeloma effect when used in combination with other myeloma treatments in the relapsed setting and we are working with members and other stakeholders to ensure access across Europe for patients who need it. Belantamab mafodotin is also associated with eye-related side-effects. Whilst these can be effectively managed using dosing amendments, and supportive care, we are working to educate patients and healthcare professionals (HCPs) to ensure they are appropriately managed to support patients’ quality of life.”

If you have any questions or require further information, please contact info@mpeurope.org

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New guidelines for the treatment and the management of myeloma and smouldering myeloma

Adam Davenport — Mon, 14 Jul 2025 11:34:18 +0000

On July 7^th, 2025, new clinical management guidelines for myeloma and smouldering myeloma were published in Nature Reviews Clinical Oncology by myeloma experts. These guidelines are written to guide doctors and healthcare professionals in myeloma and smouldering myeloma diagnosis, treatment and follow-up, based on the most up-to-date scientific knowledge. The last treatment guidelines were published in 2021 by two scientific societies: the European Hematology Association (EHA) and the European Society For Medical Oncology (ESMO). The new guidelines are developed by EHA and the European Myeloma Network (EMN).

They provide guidance for the use of established treatments as well as newly approved immunotherapies, and recommendations for complications and adverse events, such as bone disease, renal impairment and infections, cytokine-release syndrome and immune effector cell-associated neurotoxicity syndrome.

Lead author of the guidelines, Dr. Meletios Dimopoulos, who is Professor and Chairman of the Department of Clinical Therapeutics at the National and Kapodistrian University of Athens School of Medicine, in Greece, stated:

“These updated recommendations will provide an opportunity for myeloma patients in Europe to receive the best available treatment and will harmonise treatment practices along all European countries.”

Dr. Meletios Dimopoulos

What do the recommendations include?

14 new treatment regimens that have been approved by the EMA (European medicines agency) and/or the FDA (Food and drug administration, USA), including newly approved medicines.
Newly diagnosed myeloma patients: recommendations for treatment depend on whether patients are eligible for autologous stem cell transplant or not. Regardless of this, patients are now recommended to have an anti-CD38 monoclonal antibody medication, such as daratumumab or isatuximab, in combination with other therapies as first-line treatment.
Myeloma patients after first relapse: recommendations for treatment depend on what medications patients develop resistance to, or do not work for the patient, especially to anti-CD38 monoclonal antibodies, lenalidomide (an immunomodulatory medication) or bortezomib (a proteosome inhibitor). Medications that can be considered at second line (amongst other options) now include: a CAR T-cell therapy, ciltacabtagene autoleucel, and a treatment combination with belantamab mafodotin.
Myeloma patients after second or subsequent relapse: depending on prior treatments, medications and therapies that can be considered (amongst other options) now include:

o CAR T-cell therapies such as ciltacabtagene autoleucel or idecabtagene vicleucel

o Bispecific antibodies such as teclistamab, elranatamab, linvoseltamab and talquetamab

o A belantamab mafodotin treatment combination

o Melphalan flufenamide, a peptide drug conjugate derived from the chemotherapeutic agent melphalan

“These treatment guidelines can be implemented now because our recommendations are based on approved regimens from EMA or regimens that are very likely to be approved by the end of the year. We believe that the EHA/EMN recommendations may help the reimbursement process of the best available treatment for myeloma patients throughout the European countries.”

Dr. Meletios Dimopoulos

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MPE member spotlight: Multiple Myeloma Ireland

Adam Davenport — Tue, 08 Jul 2025 10:26:50 +0000

On May 23rd, MPE member organisation, Multiple Myeloma Ireland (MMI) successfully hosted its 2025 Patient and Family Information Day at the Ashling Hotel in Dublin.

Multiple Myeloma Ireland is the only charitable organisation in Ireland focused exclusively on supporting patients, families and carers with myeloma and related conditions. As a valued member of Myeloma Patients Europe (MPE), MMI strives to improve quality of life through education, advocacy and community support.

The event brought together over 100 patients, carers, healthcare professionals and advocates for education, support and community building around myeloma and AL amyloidosis care.

Professor Paul Browne, recently appointed as Chair of MMI, opened the event, emphasising community and shared knowledge. “This day is about community and courage, honouring the journeys of those affected by myeloma and AL amyloidosis, and inspiring hope through shared knowledge and support.”

The programme featured Professor Peter O’Gorman, Consultant Haematologist at the Mater Hospital in Dublin, Ireland, delivering an expert overview of myeloma and emerging treatments. Patient advocate Mags Kirwan shared her personal story with humour and honesty, and how she lives life fully with a myeloma diagnosis.

Practical sessions included nutrition guidance from Kate Ahern, Senior Dietitian at St James’s Hospital, Dublin, Ireland, and compassion management techniques from Dr. Sinead Lynch, Counselling Psychologist at the Mater Hospital.

Focused afternoon workshops covered stem cell transplantation, amyloidosis, and palliative care and side-effect management, facilitating direct dialogue between medical experts and the patient community.

MPE is proud to support its member organisations in advancing comprehensive patient care across Europe.

To find out more about MMI visit www.multiplemyelomaireland.org.

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EMA CHMP gives positive opinion on linvoseltamab for relapsed/refractory myeloma patients

Ana Vallejo — Mon, 03 Mar 2025 16:53:39 +0000

On 27^th February 2025, the Committee for Medicinal Products for Human Use (CHMP) recommended the approval of linvoseltamab for the treatment of patients with relapsed/refractory multiple myeloma. The CHMP is the European Medicines Agency’s committee responsible for opinions on all issues regarding medicinal products for human use. Based on these opinions, then the European Commission will decide to authorise or not a human medicine. Linvoseltamab is a bispecific monoclonal antibody medication marketed by Regeneron as Lynozyfic®.

The full indication proposed for approval is for the treatment of relapsed/refractory myeloma in patients who have received at least three prior therapies and have demonstrated disease progression on the last therapy. Prior therapies need to include a proteasome inhibitor such as bortezomib, an immunomodulatory agent such as lenalidomide, and an anti-CD38 monoclonal antibody such as daratumumab.

Linvoseltamab works by attaching to two protein targets on the surface of cells: B cell maturation antigen (BCMA) on myeloma cells and CD3 on T cells (immune cells). When linvoseltamab binds to these two targets, it brings immune cells and myeloma cells together to stimulate the killing of the myeloma cells.

The European Medicines Agency accepted the marketing authorization application for linvoseltamab for review in February 2024 for the same indication.

The CHMP recommendation is based on the results of the LINKER-MM1, which is a phase I/II clinical trial across 41 sites, in 7 countries, including 4 European countries. The trial was mainly assessing the safety, tolerability and effectiveness of linvoseltamab and the rates and severity of side effects, otherwise known as adverse events.

The main trial results for patients receiving 200mg of linvoseltamab showed that 70.9% of patients responded to treatment (measured at 14 months) and these responses deepened (improved) over time. The probability of being alive at one year was calculated to be 75.3%. The probability of being alive and free from myeloma at one year was calculated to be 70%.

The adverse events most commonly included were neutropenia (low white blood cells) in 42.7% of patients, cytokine release syndrome (CRS) in 46.2% of patients and anaemia (low red blood cells) in 38.5% of patients. Immune cell-associated neurotoxicity syndrome (ICANS) occurred in 7.7% of patients. ICANS is a condition resulting from certain cancer treatments. It affects the brain, which can cause symptoms such as headache, difficulty speaking, and more severely, seizures and is usually reversible. 74.4% of patients got an infection and 35.9% of patients had grade 3 or 4 infection (serious or life-threatening infection). The authors of the LINKER-MM1 trial results publication considered the safety profile of linvoseltamab to be similar to other bispecific antibody therapies that work in the same way, such as teclistamab and elranatamab. There is an ongoing confirmatory trial (LINKER-MM3) which is comparing linvoseltamab to a standard of care regimen: elotuzumab, pomalidomide and dexamethasone.

If approved, linvoseltamab could represent another bispecific antibody treatment option in addition to teclistamab, elranatamab and talquetamab for European patients with relapsed/refractory myeloma.

The European Commission now has approximately 60 days in which to consider and adopt the CHMP recommendation. If adopted by the Commission, the company will then decide in which countries it wishes to commercialise linvoseltamab followed by further country level assessments, and pricing and reimbursement decisions.

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Europe’s Beating Cancer Plan and its progress to date on rare cancers

Ana Vallejo — Fri, 28 Feb 2025 09:21:48 +0000

Among the biggest policy initiatives targeting cancer at the European Union (EU) level, Europe’s Beating Cancer Plan is one of the most important and ambitious. Launched in 2021, it set to “tackle the entire disease pathway, from prevention to quality of life of cancer patients and survivors”. On 4 February 2025 the European Commission published a report reviewing the implementation of the Plan until the end of 2024. The findings, based on an extensive desk research as well as interviews, focus groups and workshops with a variety of stakeholders, including civil society organizations, indicate major accomplishments in areas such as strengthening vaccination for HPV and HBV, tackling exposure to carcinogens (includes better protection from asbestos, air pollution, endocrine disruptors and persistent chemicals), a new EU Cancer Screening Scheme, setting up an EU Network of Comprehensive Cancer Centres and the creation of the European Cancer Information System.

On rare cancers, great progress has been done on setting up European Reference Networks for Rare Diseases (ERNs). These are cross-border networks that bring together 1 613 highly specialised centres from 382 hospitals in 27 countries allowing clinicians to discuss and seek advice from colleagues on rare disease patient cases on appropriate diagnosis and treatment. Each ERN focuses on a specific disease area. Of the 24 currently working ERNs, four focus on rare cancers: EURACAN for solid tumours, EuroBloodNet for haematological diseases, GENTURIS for genetic tumour risk syndromes and PaedCan on paediatric cancers.

Yet, as stakeholders interviewed for this review indicate, the Plan should have a greater focus on rare cancers including research into the causes of these cancers. Future areas of focus for the European Commission for tackling rare cancers, either inside the Europe’s Beating Cancer Plan or outside of it, could also include more actions on preventing and screening for rare cancers or how to apply personalised medicine and AI to diagnose earlier and better treat rare cancers. Considering that almost a quarter of all cancers are rare, more focus on rare cancers can translate into improvements in the lives of a sizeable part of Europe’s cancer patients.

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MPE member spotlight: Fundacja Carita´s European Forum of Haemato-Oncological Patients

Ana Vallejo — Thu, 06 Feb 2025 14:10:41 +0000

We are proud to highlight the work of one of our Polish members, Fundacja Carita, which recently organised the European Forum of Hemato-Oncological Patients. This forum brought together experts and stakeholders to discuss crucial topics in haematology and patient advocacy.

The event featured 12 discussion panels and lectures, delivered by 28 distinguished speakers from fields such as haematology, patient rights, AI and Telehealth, alongside representatives from the Ministry of Health. Attendees engaged in an educational and informative programme, fostering collaboration and knowledge exchange.

Highlights from the event:

Clinical trials session: MPE´s Scientific and Patient Information Manager, Katherine Jones, participated in the session. Watch here.
Video coverage of the event. Watch here.

During the Forum, Fundacja Carita presented the Wiesława Adamiec Award to individuals and organisations whose contributions significantly enhance the quality of life for haemato-oncological patients. This year’s award recipients included:

Marcin Romanowski and Comarch: for their dedication to advancing innovative solutions in haemato-oncology.
Katarzyna Pinkosz (Wprost): for her commitment to raising public awareness and promoting health-related topics in the media.
Mateusz Oczkowski, Director of the Department of Drug Policy at the Ministry of Health: for his continuous support and dialogue on key patient issues.

MPE congratulates the award recipients and commends Fundacja Carita for organising this event. We look forward to continuing our collaboration to support and empower the myeloma and AL amyloidosis community across Europe!

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Register for MPE´s European Young Myeloma Patients Group webinar on myeloma and physical fitness

Ana Vallejo — Wed, 05 Feb 2025 13:45:22 +0000

The European Young Myeloma Patients Group, created by Myeloma Patients Europe (MPE), invites you to a webinar focused on myeloma and physical fitness on Wednesday, 26 February 2025, from 16:00 – 17:00 CET.

This session will be led by Ana Bernardino, PhD scholar in Human Motricity at the Faculty of Human Kinetics (FMH) at the University of Lisbon. Ana will deliver a 40-minute presentation covering the importance of physical fitness for myeloma patients, followed by a 20-minute Q&A session to address your questions.

Registration is open to all! If you are interested in attending, or know someone who might benefit from this session, feel free to forward the registration link. If you are unable to attend live, we welcome you to send your questions in advance to patientgroup@mpeurope.org, and we will make sure they reach Ana Bernardino during the Q&A.

A recording of the webinar will be available shortly after the session, which will be shared on our social media accounts.

Meet the speaker: Ana Bernardino

Ana Bernardino is a PhD scholar in Human Motricity at the Faculty of Human Kinetics (FMH) at the University of Lisbon, where she is currently conducting research in Exercise Oncology. She holds an MSc in Exercise and Health from FMH, during which she contributed to a research project focused on the effects of exercise during chemotherapy for early breast cancer.

In addition to her academic work, Ana also collaborates as an exercise physiologist at the Associação Portuguesa Contra a Leucemia in Portugal, where she applies her expertise to support patients undergoing cancer treatment.

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