Myeloma Patients Europe

Israel Amyloidosis Association highlights innovation and patient support at annual conference

Adam Davenport — Wed, 28 Oct 2026 12:51:41 +0000

The Israel Amyloidosis Association held its annual conference on 23 October 2026, bringing together approximately 200 patients, clinicians and researchers from across Israel. The event took place just ahead of World Amyloidosis Day on 26 October and featured presentations from leading Israeli experts in haematology, cardiology and neurology.

Alongside a series of lectures and panel discussions, the association showcased its ongoing work to improve treatment access, advance research and strengthen support for people living with amyloidosis.

Expanding access to CAR T-Cell therapy

One of the conference’s key highlights was the association’s role in supporting the development of CAR T-Cell therapy for AL amyloidosis in Israel.

While CAR-T programmes in Israel were originally developed for multiple myeloma, patients with AL amyloidosis were initially excluded due to the small size of the patient population. Through advocacy, stakeholder engagement, ongoing discussions and financial support, the Israel Amyloidosis Association helped advance efforts to make the treatment available to amyloidosis patients.

As a result, Israel has become the first country in the world to offer CAR-T therapy to patients with amyloidosis, representing a significant milestone for the community.

Mosaic project nears completion

The conference also highlighted progress on the Mosaic Project, a national initiative that collects DNA samples to support AI-driven, big-data health research.

The association is working to establish a dedicated subgroup within the project comprising DNA samples from people living with AL amyloidosis across Israel. The initiative is now approaching completion and is expected to create new opportunities for research, helping to improve understanding of the disease and support future treatment advances.

AI tool supports patients accessing social rights

Another major focus of the event was CLADIS, an AI-powered tool developed to help patients navigate Israel’s complex social benefits system.

Many patients currently rely on paid support services to access benefits and entitlements. In response, the Israel Amyloidosis Association initiated the development of CLADIS to provide free guidance and support to its members.

Recognising both the need for the project and its innovative approach, Myeloma Patients Europe (MPE) awarded the association a €5,000 grant to support its development.

CLADIS has now completed development for amyloidosis and several other diseases and is currently undergoing beta testing with patients. The platform helps users access a range of benefits, including disability allowances, special services, long-term care support, income tax exemptions and disabled parking permits.

The Israel Amyloidosis Association expressed its appreciation to MPE for supporting the initiative and helping bring the project closer to patients who need it and MPE is happy to help support such vital work!

The post Israel Amyloidosis Association highlights innovation and patient support at annual conference appeared first on Myeloma Patients Europe.

MPE webinar | International Symposium on Amyloidosis (ISA 2026) highlights

Ana Vallejo — Wed, 28 Oct 2026 10:45:23 +0000

Myeloma Patients Europe (MPE) will host a webinar the “ International Symposium on Amyloidosis (ISA 2026) highlights”, on Wednesday, 25 November 2026 at 17:00 CET.

During this webinar, you will learn about the latest research findings in AL amyloidosis presented at ISA 2026, held from 14 to 18 November 2026 in Montevideo, Uruguay and organised by the International Society of Amyloidosis (ISA).

The presentation will be given by Dr. Monique Minnema, a haematologist at University Medical Center Utrecht, the Netherlands. She specialises in AL amyloidosis and myeloma and has extensive clinical and research experience in developing new treatments and improving patient care.

Dr. Minnema’s presentation will cover the latest developments in AL amyloidosis treatment, recent clinical trial results, ongoing research into new diagnostic tests and key takeaways from the conference. The presentation will be followed by a Q&A session, during which you will have the opportunity to ask Dr. Minnema your questions.

Should you be unable to attend the webinar live, you can send your questions in advance to info@mpeurope.org and we will share them with the speaker.

A recording will be available shortly after the webinar. Keep an eye on our social media channels for updates. We look forward to your participation.

Meet our speaker

Dr. Monique Minnema is haematologist at University Medical Centre Utrecht, the Netherlands. She was trained as internist and haematologist at the Academic Medical Center, Amsterdam and the University Medical Center, Utrecht, in the Netherlands. She started working as a haematologist in 2005 at the department of haematology, UMC Utrecht and was appointed full professor in 2019.

She is a myeloma and AL amyloidosis specialist. She is the author on several national and international guidelines on the diagnosis and treatment of plasma cell diseases. She is founder and medical lead of the haematology clinical research team of the UMC Utrecht. Monique Minnema is a clinical researcher and participated in many breakthrough clinical trials, her main focus of clinical research is the development of novel therapies and new research structures for haematology research in the Netherlands.

The post MPE webinar | International Symposium on Amyloidosis (ISA 2026) highlights appeared first on Myeloma Patients Europe.

Amen Association promotes shared decision-making across Israel

Adam Davenport — Tue, 27 Oct 2026 12:43:27 +0000

Recently, AMEN Association, one of Myeloma Patients Europe’s (MPE) member organisations in Israel, carried out its “Changing Direction” campaign to help people living with myeloma and their families better understand the advanced treatment options available today and feel more confident when participating in treatment decisions alongside their healthcare team.

The campaign was delivered in two phases. The first phase ran for approximately one month, from mid-July to mid-August 2026. The second phase began on 23 September 2026 and included around two weeks of radio activity followed by two weeks of digital outreach.

The campaign was supported by a dedicated content hub on the association’s website, bringing together clear information about myeloma and current treatment options, personal stories from patients, and expert insights from physicians. Topics covered included shared decision-making, tailoring treatment to individual patient needs, and recent developments in myeloma care.

As part of the initiative, AMEN also organised a series of webinars for patients and their families. These sessions provided opportunities to learn more about myeloma, ask questions, and gain a deeper understanding of the issues that matter most to them. The association believes that access to reliable and accessible information helps patients become more active partners in managing their disease.

AMEN’s work reflects MPE’s commitment to patient-centred care and shared decision-making. During a month that also includes Blood Cancer Awareness Month and European Myeloma Day, initiatives such as “Changing Direction” help raise awareness of myeloma while empowering patients to play an informed role in decisions about their treatment and care.

The post Amen Association promotes shared decision-making across Israel appeared first on Myeloma Patients Europe.

EMA committee recommends new talquetamab treatment combinations for relapsed or refractory myeloma

Ana Vallejo — Tue, 27 Oct 2026 10:49:05 +0000

On 15 October 2026, the Committee for Medicinal Products for Human Use (CHMP) recommended extending the approved use of talquetamab (Talvey®) to include combinations with daratumumab, either alone or together with pomalidomide, for myeloma patients who have received at least one previous line of treatment.

The CHMP is the European Medicines Agency’s (EMA) committee responsible for evaluating medicines and recommending whether medicines should be approved in the European Union. A positive recommendation from the CHMP still requires formal approval by the European Commission before it can be implemented. This process typically takes a few months.

Talquetamab is a targeted immunotherapy that binds to the GPRC5D protein on myeloma cells and helps the immune system’s T cells to recognise and kill myeloma cells.

The CHMP recommendation is based on the results of the phase III MonumenTAL-3 study, published in the New England Journal of Medicine. The study showed that patients treated with talquetamab plus daratumumab, with or without pomalidomide, lived longer without their myeloma getting worse than patients treated with daratumumab, pomalidomide and dexamethasone. Click here to watch a patient-friendly video explaining the study, its results and what they could mean for myeloma patients.

Talquetamab is currently authorised as monotherapy (on its own) for myeloma patients who have received at least three previous treatments, including an immunomodulatory agent (e.g. lenalidomide or pomalidomide), a proteasome inhibitor (e.g. bortezomib or carfilzomib), and an anti-CD38 monoclonal antibody (e.g. daratumumab or isatuximab), and whose disease has worsened despite their most recent treatment.

It would also mark the first time a GPRC5D-targeting bispecific antibody could be used as a second-line myeloma treatment in the European Union.

Following European Commission approval, treatment availability will depend on pricing, reimbursement and access decisions in individual European countries.

The post EMA committee recommends new talquetamab treatment combinations for relapsed or refractory myeloma appeared first on Myeloma Patients Europe.

World Amyloidosis Day: help your doctor spot AL amyloidosis sooner

Adam Davenport — Fri, 23 Oct 2026 07:59:40 +0000

World Amyloidosis Day is 26 October. To mark the day, MPE is asking everyone in our community to download the MPE Amyloidosis Diagnosis Pathway and share it with their GP or family doctor. By helping primary care professionals recognise the signs and symptoms of AL amyloidosis earlier, we can play an important role in reducing delays to diagnosis and helping people access the care and treatment they need as quickly as possible.

World Amyloidosis Day is led by the Amyloidosis Alliance and raises awareness of amyloidosis around the world. MPE represents people with AL amyloidosis and their patient groups across Europe, so we are supporting the day with a focus on where we can make the biggest difference: faster diagnosis. Raising awareness among GPs and family doctors is a key part of that effort, as early recognition can have a significant impact on patient outcomes.

Why early diagnosis matters

AL amyloidosis is a rare condition, with around nine new cases per million people each year. Abnormal plasma cells in the bone marrow produce misfolded light chains, which can build up in organs such as the heart, kidneys, liver and digestive system, preventing them from working properly.
Because symptoms can be vague and resemble those of other conditions, many people wait a long time for answers.

In an MPE survey of people with AL amyloidosis:
• 70% waited three months or more before seeking medical help
• 47% waited five months or more for a diagnosis
• 47% saw four or more specialists before they were diagnosed
• 56% had five or more medical consultations before diagnosis

The sooner AL amyloidosis is diagnosed, the sooner treatment can start. Early treatment can help limit organ damage and improve survival.

The MPE Amyloidosis Diagnosis Pathway

GPs and family doctors are usually the first healthcare professionals someone sees when symptoms begin. MPE developed the MPE Amyloidosis Diagnosis Pathway with our expert Medical Advisory Committee to help primary care professionals recognise the signs and symptoms of AL amyloidosis and understand which tests to request, so people can be referred to a specialist sooner. Like our myeloma diagnosis pathway, it is written specifically for GPs and family doctors.

How you can help:

Download the MPE Amyloidosis Diagnosis Pathway.
Share it with your GP or family doctor at your next appointment or by email.
Patient groups: share it with your members and ask them to pass it on to their GP or family doctor.

The MPE Amyloidosis Diagnosis Pathway is also available in Spanish.

Jackie’s story

Jackie from Scotland was diagnosed with AL amyloidosis in 2017 at the age of 50. Before her diagnosis, she returned to her GP several times with swollen legs, blood in her urine and frothy urine, and she saw several consultants across different specialties.

“I was going to my GP frequently and persistently with symptoms that seemed, on the face of it, quite innocuous… You need somebody to be persistent for you and to explain these symptoms, to group them all together to get a diagnosis.”

Thank you, Jackie, for sharing your story.

More resources to share

Our infographics from previous awareness campaigns are free to download and share. The editable versions can be adapted with your own logo.

This World Amyloidosis Day, one simple step can make a difference: share the MPE Amyloidosis Diagnosis Pathway with your GP or family doctor.

The post World Amyloidosis Day: help your doctor spot AL amyloidosis sooner appeared first on Myeloma Patients Europe.

MPE members drive myeloma awareness across Europe during EMD and BCAM

Adam Davenport — Tue, 06 Oct 2026 08:09:10 +0000

September proved to be an extraordinary month for myeloma advocacy across MPE’s member network. Our members delivered bold, impactful campaigns to raise awareness during Blood Cancer Awareness Month (BCAM) and European Myeloma Day (EMD) on 27 September.

Raising public awareness

Across Europe, members used creative and high-profile campaigns to put myeloma in the spotlight. Slovenia’s Društvo BKB delivered its most comprehensive campaign yet, combining press conferences, hospital information stands, a “Walk in Red” event and a photography competition. In Poland, Fundacja Carita hosted its 6th Annual Health Rally, bringing together more than 800 patients, advocates and healthcare providers to raise awareness of myeloma and other blood disorders.

Serbia’s Association of Myeloma Patients Serbia (AMPS) took awareness nationwide with an EMD event and caravan campaign, while Portugal’s Associação Portuguesa Contra a Leucemia (APCL) ran a month-long campaign of activities focused on blood cancer awareness.

Improving diagnosis and engaging healthcare professionals

Several members focused on improving awareness and understanding of myeloma among healthcare professionals. In Serbia, the caravan campaign distributed the myeloma diagnosis pathway to GPs, while Lithuania’s Kraujas published the MPE Myeloma Diagnosis Pathway on a digital platform accessed by more than 5,000 GPs.

Educating and empowering patients

Patient education remained a strong focus throughout the month. Russia’s Mercy Bridge hosted a Patient School covering diagnosis, innovative therapies and supportive care, while the Czech Republic’s Klub pacientů mnohočetný myelom (KPMM) hosted a two-day patient seminar.
In Portugal, APCL’s month-long programme included specialist seminars and a survivorship conference, providing opportunities for patients and others in the myeloma community to access information and share experiences.

Supporting the myeloma community

Members also created opportunities for people affected by myeloma to connect, learn and support one another. Multiple Myeloma Ireland brought the community together through its “Living Well with Myeloma” event, which welcomed more than 70 myeloma patients, carers and advocates.

Together, these campaigns reflect the dedication of our members to putting myeloma on the European health agenda, from public awareness to clinician engagement to advocating for access to innovative treatments.

The post MPE members drive myeloma awareness across Europe during EMD and BCAM appeared first on Myeloma Patients Europe.

MPE webinar: Long-term outcomes of CAR T-cell therapy in myeloma

Ana Vallejo — Thu, 01 Oct 2026 16:08:21 +0000

Chimeric antigen receptor (CAR) T-cell therapy is a treatment that uses genetically modified immune cells (T-cells) to treat myeloma. While clinical studies have demonstrated the strong efficacy of CAR T-cell therapies in this disease, many patients experience side effects that can persist for months or years after treatment.

To inform myeloma patients and the myeloma community about the long-term benefits and side effects of CAR T-cell therapies, Myeloma Patients Europe (MPE) will host the webinar on “Long-term outcomes of CAR T-cell therapy in myeloma” on Wednesday, 21 October at 16:00 CEST.

During this webinar you will hear about the long-term efficacy and safety data from clinical trials of CAR T-cell therapies in myeloma, and what recovery, long term monitoring and side-effect management may look like. This presentation will be given by Dr. Hermann Einsele, from the University of Würzburg in Germany, who is a myeloma expert with extensive experience in CAR T-cell therapies.

You will also hear from David Williams, a myeloma patient and Myeloma UK (MUK) member, who received CAR T-cell therapy three years ago. David will share his experiences, including preparation, outcomes, side effects, and quality of life.

The two presentations will be followed by a Q&A session, during which you will have the opportunity to ask both speakers your questions.

Whether you are a patient, a carer or a patient advocate, this webinar will help you stay informed and better understand myeloma CAR T-cell therapy and its long-term outcomes.

Should you be unable to attend the webinar, please feel free to send your questions in advance to info@mpeurope.org and we will make sure they reach our speakers. A recording of the webinar will be available shortly after the session. Keep an eye out for our social media profiles! We look forward to your participation.

Meet our speakers

Dr. Herman Einsele is Full Professor of Internal Medicine and Director of the Department of Internal Medicine II, University Hospital Würzburg, Germany since 2004. Since 2018, he is the chair of the Specialized Working Group on Immune Therapies for Hematologic Disorders of the European Hematology Association (EHA).

Dr. Einsele is an expert in the field of myeloma with focus on CAR T-cell therapy, bispecific antibodies, adoptive immunotherapy and stem cell transplantation.

David Williams is a myeloma patient and part of the MPE member organisation Myeloma UK (MUK). He was diagnosed with myeloma in October 2022 and was admitted on the sponsored CAR T-cell therapy clinical trial called CARTITUDE. He has been in remission since October 2023.

David is almost retired and lives with his wife in Bristol, UK. He has a daughter and son and four grandchildren.

The post MPE webinar: Long-term outcomes of CAR T-cell therapy in myeloma appeared first on Myeloma Patients Europe.

MPE strengthens patient voice in cancer quality-of-life research at EORTC meeting

Adam Davenport — Thu, 01 Oct 2026 12:12:29 +0000

Last week MPE was in Zagreb for the Autumn EORTC Quality of Life Group meeting, connecting with colleagues working to strengthen the role of quality-of-life data in cancer research.

The EORTC is the European Organisation for Research and Treatment of Cancer, a cancer research organisation that brings people together to answer important questions about which cancer treatments work best and what their impact is on patients’ lives. The Quality of Life group focuses on measuring and understanding patients’ quality of life in cancer research.

Ahead of the official meeting, MPE’s Board Member Vincent Claus contributed to the pilot in-person SISAQOL training course. SISAQOL was a collaborative project that developed recommendations for designing, analysing, presenting and interpreting patient-reported data in cancer clinical trials. MPE was a work package lead on this European Union-funded project. Over the training course, participants learned and discussed how to apply the SISAQOL project recommendations.

MPE’s Head of Patient Research, Eilidh Duncan, attended the two-day in-person Quality of Life group meeting and represents MPE on a number of active projects within the group. These projects include the development of measures to capture patients’ experiences of T-cell engaging immunotherapies and to understand the impact of cancer and treatments on finances.

The meeting and discussions provide an important opportunity to bring the perspectives of the patient community and patient advocates into the group’s work. It also enables MPE to learn from others and share this learning with our members and community on new developments and best practices in quality of life measurement, analysis and interpretation.

The post MPE strengthens patient voice in cancer quality-of-life research at EORTC meeting appeared first on Myeloma Patients Europe.

Highlights from the International Myeloma Society (IMS) annual meeting

Adam Davenport — Wed, 30 Sep 2026 14:06:51 +0000

From September 23-26, Myeloma Patients Europe (MPE) attended the 23rd International Myeloma Society (IMS) Annual Meeting in Glasgow, Scotland. The IMS Annual Meeting is one of the most important international conferences for myeloma researchers and healthcare professionals, bringing together experts to discuss basic science, preclinical research and clinical developments in myeloma. More than 3,000 people from over 75 countries attended this year’s meeting.

MPE was there to learn about the latest developments in myeloma treatment, diagnosis and monitoring, and to make sure that patients’ perspectives and priorities are represented in discussions about the future of myeloma care. Here are some of the highlights we took away from this year’s meeting:

Looking at the whole person

The Nursing and allied health symposium had a strong focus on the importance of quality of life and understanding what matters to patients.

One key message was that a frailty score alone does not always give a complete picture of someone’s health. A full geriatric assessment can consider areas such as mobility, mood and ability to carry out everyday activities, helping healthcare teams identify areas where support could help. The symposium emphasized listening to patients, as healthcare professionals may underestimate symptom severity. Patient-reported outcome measures (PROMs) can help healthcare teams and researchers understand the impact of myeloma and its treatments more fully.

We also heard how, as treatments become increasingly effective, health-related quality of life and PROMs will become increasingly important in clinical trials. We want to see clinical trials place greater emphasis on what matters to patients, including symptoms, side effects and how treatments affect everyday life, particularly when treatments offer similar levels of disease control.

Blood tests for diagnosing and monitoring myeloma

There was a lot of interest in new blood-based technologies for diagnosing and monitoring myeloma. Many aspects of disease monitoring, including assessing treatment response and minimal residual disease (MRD), currently involve collecting a bone marrow sample through a biopsy. People living with myeloma can have negative experiences of bone marrow biopsies, so there is interest in whether blood-based approaches could make monitoring easier and improve quality of life.

Several approaches are being studied, including looking for circulating tumour cells, using mass spectrometry to detect very small amounts of paraprotein, and analysing circulating tumour DNA. These techniques may help detect very small amounts of disease, assess risk and monitor treatment response. However, most blood-based approaches are not yet ready to replace bone marrow testing, which remains the gold standard test.

Preventing infections and side effects

A key message from the meeting was that infection risk changes over time and is different for different treatments. Rather than using a one-size-fits-all approach, healthcare teams are increasingly looking at how immune function, blood counts and other risk factors can be used to tailor infection prevention to each person.

There was also discussion about whether adjusting treatment schedules, including reducing how often some treatments are given or using fixed-duration treatment, could reduce the risk of infections and other side effects while maintaining treatment benefits.

Developments in myeloma treatment

Treatment developments were another important part of the meeting, with new results highlighting advances in both relapsed/refractory and newly diagnosed myeloma. Of note:

The CERVINO clinical trial showed that the investigational bispecific antibody etentamig improved response rates and helped people stay free from worsening myeloma for longer, compared with standard available treatments in people whose myeloma had already been exposed to three major classes of treatment. The treatment was given once every four weeks, which is more convenient for patients than the more frequent dosing schedules used for some other bispecific antibodies. Watch our interview explaining the outcomes of the CERVINO clinical trial.

The EXCALIBER-RRMM clinical trial found that iberdomide, a newer type of immunomodulatory drug, combined with daratumumab and dexamethasone led to deeper responses than daratumumab, bortezomib and dexamethasone in people with relapsed or refractory myeloma. There were more problems with low levels of neutrophils (neutropenia) and infections with the iberdomide combination, but nerve damage (peripheral neuropathy) was less common. Watch our interview explaining the EXCALIBER-RRMM clinical trial.

MPE at IMS

We were pleased to share MPE’s research at the meeting:

We presented a poster on how myeloma clinical trials can better include people from groups that are often underrepresented in research. It is important that clinical trials include the wide range of people affected by myeloma, so that new treatments work well for different people and communities and can be trusted by those who use them. Our research found that many approaches to making clinical research more inclusive were developed in the US. While these have often focused on improving inclusion across different ethnic groups, other factors that can affect someone’s opportunity to take part, such as mental health and their ability to give informed consent have received less attention. The approaches may therefore need to be adapted to ensure they are relevant to patients across Europe.

We also took part in the first ever patient group session at IMS, where we had the opportunity to share MPE’s priorities and our work to improve access to treatment and care across Europe, alongside other international patient organisations. We are grateful to the IMS for creating opportunities for patient organisations to be part of these discussions. As MPE Co-CEO Kate Morgan said during the meeting:

“We need to be working not just with other patient organisations but also with the IMS, industry and academic groups to tackle the shared challenges in myeloma and to bring the innovation we’ve seen this weekend to patients globally.”

Looking ahead

For MPE, the important question is not only what new treatments can achieve, but also what the experience of receiving those treatments is like for patients. Treatments need to be effective, but they also need to fit into people’s lives, support quality of life and be accessible to the people who need them.

If you have any questions or comments about IMS 2026, please contact info@mpeurope.org

The post Highlights from the International Myeloma Society (IMS) annual meeting appeared first on Myeloma Patients Europe.

EMA committee recommends melflufen label expansion to third-line myeloma treatment

Ana Vallejo — Tue, 22 Sep 2026 08:00:40 +0000

On September 17, 2026, the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) recommended extending the approved use of melphalan flufenamide (melflufen, Pepaxti®) to third-line myeloma treatment.

The CHMP is the European Medicines Agency’s (EMA) committee responsible for evaluating medicines and making recommendations on whether they should be approved for use in the European Union (EU). A positive recommendation from the CHMP still requires formal approval by the European Commission before it can be implemented, a process that typically takes a few months.

Melflufen is a medicine called a peptide drug conjugate. It is designed to deliver the active chemotherapy agent melphalan into myeloma cells, where it helps damage and kill them.

The CHMP recommendation would allow melflufen, in combination with dexamethasone, to be used in myeloma patients who have received at least two prior lines of therapy and whose disease is refractory to lenalidomide and their last line of treatment.

Melflufen is currently authorised in the EU for myeloma patients who have received at least three prior lines and whose disease is refractory to a proteasome inhibitor (e.g. bortezomib or carfilzomib), an immunomodulatory agent (e.g. lenalidomide or pomalidomide) and an anti-CD38 monoclonal antibody (e.g. daratumumab or isatuximab).

The recommendation is based on data from the phase 3 OCEAN trial. This study showed that melflufen plus dexamethasone delayed myeloma progression compared with pomalidomide plus dexamethasone, although it did not significantly improve overall survival in the overall trial population.

If approved, this would provide another treatment option for third-line myeloma patients in the EU. Following European Commission approval, treatment availability will depend on pricing, reimbursement and access decisions in individual European countries.

The post EMA committee recommends melflufen label expansion to third-line myeloma treatment appeared first on Myeloma Patients Europe.