AL amyloidosis Archives - 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 International 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!

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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.

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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.

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Myeloma EHA 2026 preview

Adam Davenport — Mon, 01 Jun 2026 14:27:54 +0000

The European Hematology Association (EHA) 2026 Annual Congress, the largest haematology event in Europe, will take place from 11–14 June in Stockholm, Sweden. The congress will bring together experts from across the globe to present the latest advances in haematological diseases, including myeloma and AL amyloidosis.

Myeloma Patients Europe (MPE) will be attending EHA to keep the patient community informed about key developments in treatment and care. Throughout the event, we will share real-time updates via our social media channels (LinkedIn, Facebook, Instagram, X and YouTube), including expert video interviews and key highlights from the scientific sessions.

MPE will also participate in various parts of the congress programme, including the satellite symposia, the EHA-Patient Joint Symposium and poster sessions. Make sure you are following us to receive real-time updates during the events.

Key research in myeloma and AL amyloidosis at EHA 2026

The EHA 2026 scientific programme includes many abstracts on myeloma and AL amyloidosis, covering both established and new treatment approaches. While this article won’t summarise all relevant research, these are the presentations which we believe will be of greatest interest to patients and the wider myeloma and AL amyloidosis community:

Many presentations will present positive results of bispecific antibodies in myeloma, including:

Teclistamab: results from the phase III MajesTEC-9 clinical trial show the benefits of teclistamab monotherapy compared with standard of care combinations in patients with relapsed or refractory myeloma.
Teclistamab and daratumumab: analyses from the phase III MajesTEC-3 clinical trial demonstrate the efficacy of teclistamab plus daratumumab across high-risk subgroups of patients with relapsed or refractory myeloma.
Talquetamab: results from the phase III MONUMENTAL-3 clinical trial show the benefits of talquetamab plus daratumumab with or without pomalidomide compared to a combination of daratumumab, pomalidomide, and dexamethasone in patients with relapsed or refractory myeloma.
Infection prevention with BCMA bispecific antibodies: results from a retrospective, real-world study show that primary prophylaxis (treatment before any infection occurs) with immunoglobulin-replacement therapy improves survival in patients with myeloma treated with BCMA bispecific antibodies.

There will be several presentations dedicated to CAR T-cell therapies for the treatment of myeloma, including:

CB-011: early results from the phase I CAMMOUFLAGE clinical trial show the safety and preliminary efficacy of the allogeneic anti-BCMA CAR T-cell therapy CB-011 in patients with relapsed or refractory myeloma.
Arlocabtagene autoleucel: an updated phase I clinical trial results show promising safety and efficacy of the GPRC5D-targeted CAR T-cell therapy arlocabtagene autoleucel in patients with relapsed or refractory myeloma who received 1 to 3 prior lines of treatment.
BMS-986453: preclinical and early clinical development data showing the potential of the dual-targeting BCMA andGPRC5D CAR T-cell therapy BMS-986453 in patients with relapsed or refractory myeloma.

The treatment of newly diagnosed myeloma patients will also be addressed in several presentations, including:

Daratumumab + VRd: final analysis from the phase III CEPHEUS clinical trial confirms previously reported efficacy and safety results demonstrating the benefits of adding daratumumab to the bortezomib, lenalidomide, and dexamethasone treatment combination in transplant-ineligible patients with newly diagnosed myeloma.
Iberdomide + DVd: phase I/II results from the IDEAL clinical trial show the safety and efficacy of an iberdomide-based quadruplet regimen with daratumumab, bortezomib, and dexamethasone in patients with newly diagnosed myeloma.

Smouldering myeloma treatment will also be covered, with a few presentations, including:

Elranatamab: first results from the phase II EMN34/ERASMM clinical trial show the safety and efficacy of elranatamab as a promising early intervention strategy in patients with high-risk smouldering myeloma.

Several presentations will focus on AL amyloidosis treatment, including:

Anselamimab: results from the phase III CARES clinical trial show a survival benefit of adding the amyloid depleter anselamimab (also known as CAEL-101) to standard treatments in patients with newly diagnosed stage IIIa and IIIb AL amyloidosis.
Linvoseltamab: early efficacy and safety results from the phase I/II LINKER AL2 clinical trial show promising results for the BCMA bispecific antibody linvoseltamab in patients with relapsed or refractory AL amyloidosis.
Etentamig: safety and efficacy results from the phase I clinical trial confirm previously reported promising results for the BCMA bispecific antibody etentamig in patients with relapsed or refractory AL amyloidosis.

MPE at EHA 2026

MPE will attend EHA 2026 to gather the most important updates on myeloma and AL amyloidosis and other key advocacy topics such as access to treatment and quality of life for patients. In particular, MPE will participate in the following sessions:

MPE board member, Snežana Doder, will share patients’ perspectives on treatment access during the session “Inequalities in drug access in lymphoid malignancies (multiple myeloma)” co-chaired by MPE President, Barbara Leonardi on Sunday, 14 June.

MPE Head of Patient Research, Eilidh Duncan, will speak about shared decision-making and patients’ perspectives on treatment administration routes during the satellite symposium “Individualisation Requires Communication: Working With Our Patients With Newly-Diagnosed Multiple Myeloma (NDMM) to Optimise Treatment Outcomes”, which will take place on Saturday, 13 June.

MPE Head of Medical Education and Scientific Engagement, Solène Clavreul, along with Scientific and Data Strategy Lead at TriNetX, Zuzana Dostálová, will present the results of MPE and TriNetX’s collaborative research on real-world eligibility and treatment decision factors, alternative treatments and outcomes of myeloma patients considered for CAR T-cell therapy in Germany in the poster session on Friday, 12 June.

MPE Head of Patient Research, Eilidh Duncan, will present the results of MPE’s research on real-world experiences of family carers supporting people with myeloma in the poster session on Friday, 12 June.

With so much data being presented, EHA 2026 promises to be an exciting meeting for the myeloma and AL amyloidosis community. MPE looks forward to sharing insights and analysis throughout and in the weeks after the event, including our EHA highlights webinar.So, be sure to follow us on all our channels for full coverage and register for our upcoming webinar!

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ASH 2025 summary video interviews

Ana Vallejo — Fri, 12 Dec 2025 12:19:14 +0000

The largest haematology meeting in the world has just finished. The American Society of Hematology (ASH) Annual Congress took place in Orlando, Florida, US, where the latest research in blood diseases was presented. Myeloma Patients Europe (MPE) interviewed key experts to learn more about the most relevant studies and abstracts in myeloma and AL amyloidosis.

Watch these interviews to learn what the most important updates were in myeloma and AL amyloidosis and why these results matter for people living with these conditions. Click on the thumbnails to watch.

On behalf of Myeloma Patients Europe, Prof. Dr. Hermann Einsele, shares his key myeloma highlights of the ASH 2025 conference.

Prof. Dr. Einsele is hematologist, oncologist, Professor of Internal Medicine and Director of the Department of Internal Medicine II at the University Hospital Würzburg in Germany. He is a world leading expert in the field of myeloma and immunotherapy and in particular CAR T-cells and bispecific antibodies.

He emphasised that the myeloma treatment landscape has never evolved as rapidly as today and we thank him for his encouraging words and his professional and insightful presentation.

Dr. Charlotte Pawlyn – Majestec-3

Dr. Charlotte Pawlyn from The Royal Marsden NHS Foundation Trust and the Institute of Cancer Research, London, UK, explains the main results of MajesTEC-3, one of the most important myeloma studies. This trial compared the combination of teclistamab and daratumumab (Tec-Dara) versus daratumumab with either pomalidomide or bortezomib and dexamethasone in patients who had received one to three previous lines of treatment. The Tec-Dara combination showed unprecedented benefits when used earlier in the myeloma pathway.

Dr. Phoebe Joy Ho – inMMyCAR

Dr. Phoebe Joy Ho from the Royal Prince Alfred Hospital and the University of Sydney, Australia, explains the results of inMMyCAR. This first-in-human study of KLN1010, a novel “in vivo” CAR T-cell therapy targeting BCMA, showed very good responses in four treated patients with no serious instances of cytokine release syndrome (CRS) or neurotoxicity (ICANs).

Dr. Bruno Paiva – GEM-CESAR

Dr. Bruno Paiva, Clínica Universidad de Navarra, Madrid, Spain, explains the main results of the GEM-CESAR clinical trial presented at ASH 2025. This a study assessing early rescue treatment with daratumumab, pomalidomide and dexamethasone (DPd) in people with high-risk smoldering myeloma.

Dr. Shambavi Richard – DURGA-1

Dr. Shambavi Richard, Icahn School of Medicine at Mount Sinai, New York, United States, explains the main results of the DURGA-1 trial evaluating AZD0120, a BCMA/CD19 dual-targeting CAR T-cell therapy using FasTCAR technology for rapid manufacturing. Early data showed promise for this dual-target approach in relapsed/refractory multiple myeloma patients.

Dr. Xavier Leleu – LINKER-MM4

Dr. Xavier Leleu, Centre Hospitalier Universitaire de Poitiers, France, explains the main results of the LINKER-MM4 clinical trial which evaluates safety and efficacy of linvoseltamab as a simplified monotherapy in first-line regimen in newly diagnosed myeloma patients.

Dr. Charlotte Pawlyn – UK MRA FiTNESS trial

Dr. Charlotte Pawlyn, from The Royal Marsden NHS Foundation Trust and the Institute of Cancer Research, London, UK, explains the main results of the MRA FiTNESS trial, which aims to understand whether the International Myeloma Working Group (IMWG) frailty score can be used to tailor treatment according to a myeloma patient’s level of fitness.

Dr. Phoebe Joy Ho – CAMMA-3

Dr. Phoebe Joy Ho, Royal Prince Alfred Hospital and University of Sydney, Australia, explains the first results from the phase Ib CAMMA-3 study, in which subcutaneous cevostamab shows manageable safety and meaningful clinical activity in relapsed/refractory myeloma (RRMM).

Dr. Dominik Dytfeld – COBRA trial

Dr. Dominik Dytfeld, Poznan University of Medical Sciences, Poland, lead author of the COBRA trial, explains this study evaluating carfilzomib, lenalidomide and dexamethasone (KRd) versus bortezomib, lenalidomide and dexamethasone (VRd) in patients with newly diagnosed multiple myeloma (NDMM).

Dr. Bruno Pavia – NoMoreMGUS

Dr. Bruno Paiva, Clínica Universidad de Navarra, Madrid, Spain, explains the main results of the NoMore MGUS clinical trials, one of the largest MGUS (Monoclonal Gammopathy of Undetermined Significance) data collection trials in the world.

Dr. Salomon Manier – IFM2021-01 trial

Dr.Salomon Manier, University of Lille, France, talks through this teclistamab trial. This study shows that an “all-antibody–based” doublet regimen of teclistamab and daratumumab is highly effective and well-tolerated in elderly newly diagnosed myeloma patients.

Dr. Paolo Milani – AL amyloidosis highlights

Dr. Paolo Milani, University of Pavia, Italy, explains for MPE the most important AL amyloidosis updates presented at ASH 2025, as well as the role of the CAR T-cell therapy in this disease or the main challenges AL amyloidosis is facing to improve treatment outcomes.

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MPE myeloma highlights from ASH 2025

Ana Vallejo — Fri, 12 Dec 2025 10:34:36 +0000

From 6-9 December Myeloma Patients Europe (MPE) attended the American Society of Hematology (ASH) Annual Meeting in Orlando, Florida. Over 20,000 researchers, doctors, nurses and patient advocates attended the meeting to share and discuss the results of the latest research from across blood cancers.

ASH was a great way to close out another successful year at MPE, meeting with our medical, advocacy and industry partners and hearing about groundbreaking research in myeloma and AL amyloidosis. We were also privileged to present data from our own patient research Myeloma patients’ attitudes and perceived burden of treatment administration routes and locations: insights from a pan-European survey, which will soon be published in the journal Frontiers.

Below we outline the key updates in myeloma. You can see our AL amyloidosis summary interview and also register for our ASH myeloma highlights webinar.

Key myeloma updates

Bispecific antibodies are transforming outcomes

Without a doubt, the main highlight of ASH 2025 were the results of the MajesTEC-3 clinical trial. Watch a lay friendly summary with Dr. Charlotte Pawlyn from Royal Marsden Hospital and Institute of Cancer Research (ICR), London.

MajesTEC-3 is a large research study testing the combination of teclistamab (a bispecific antibody) and daratumumab (a monoclonal antibody) for patients after one – three prior lines of therapy. The teclistamab and daratumumab (Tec-Dara) combination was compared to daratumumab in combination with either pomalidomide or bortezomib with dexamethasone (DPd or DVd).

Most trials of bispecific antibodies have looked at their role in heavily pretreated myeloma patients. MajesTEC-3 is one of the first trials to show clear and unprecedented benefits of using these medicines earlier on in the myeloma pathway, in combination with other myeloma medicines.

An important note for patients to consider are the high infection rates in the Tec-Dara arm, which is consistent with other trials of bispecific antibodies. Whilst the risk of infection reduces over time and was treated in the trial with IV (intravenous – through the vein) immunoglobulins (IG) there is much discussion in the myeloma community about the role and access to IVIG to ensure that patients can receive bispecific antibody therapies safely.

We will be following the ongoing results of MajesTEC-3 with interest. We are also interested in the potential of bispecific combinations when used in newly diagnosed patients, where drugs typically get the best responses and how the community will work to seek access for these medicines.

New CAR-Ts may be more efficient and less toxic

Very early results were presented at ASH on in vivo CAR T-cell therapy (CAR-T). The currently approved CAR-Ts in Europe require a patient’s immune cells (T-cells) to be taken out of their body and programmed to find and kill myeloma cells. In vivo CAR-T is where the patient’s immune cells are programmed within their body. If successful, this could mean an easier and quicker way of administering CAR-T without the need for chemotherapy whilst a patient waits for treatment.

The inMMyCAR clinical trial showed results from four myeloma patients of a CAR-T called KLN1010. KLN1010 targets BCMA which is expressed on the surface of myeloma cells. This is the first time it has been used in patients. Whilst very early, the data showed very good responses in treated patients and no serious instances of cytokine release syndrome (CRS) or Immune Effector Cell Associated Neurotoxicity Syndrome (ICANs) – two side-effects that are typical to CAR-T.

View an interview with author Dr. Phoebe Joy Ho from Royal Prince Alfred Hospital and the University of Sydney, Australia.

Key discussions also centred around anitocabtagene autoleucel (anito-cel) – a BCMA CAR-T that is likely to be assessed by health authorities in the near future. Updated results of the IMMagine-1 trial again highlighted that anito-cel continues to show strong responses in relapsed myeloma patients. The side-effects reported seem to be less frequent and less severe than in other trials for similar BCMA CAR-T.

Finally, there were also a range of presentations on early and existing CAR-T therapies. Of note, the Durga-1 trial looked at optimum dosing for a “dual target CAR-T” called AZD0120. You can learn more about this here.

Most CAR T-cells are programmed to find the BCMA protein expressed on the surface of myeloma cells. Once found, it binds to and kills the myeloma cell. In the DURGA-1 trial, the CAR-T cells are programmed to find two different proteins expressed on the surface of myeloma cells – BCMA and CD19. Both BCMA and CD19 are widely expressed, making them complimentary targets for treatment. Whilst very early, the data shows promise for further exploration in myeloma. It also used FasTCAR technology which aims to manufacture CAR-T quickly, reducing delays for patients.

We look forward to what the coming year brings for myeloma research

While we can’t include every update from ASH 2025 here, if you are interested in seeing more interviews about the data, please visit our our ASH 2025 summary video interviews.

You can also register for our ASH myeloma highlights webinar here.

On a final note, with the volume of research and developments we are seeing this year in myeloma, we are looking forward to what 2026 will bring in terms of exploring new ways to optimise myeloma treatment and offer patients more effective, less burdensome medicines. We will continue to engage with our members and stakeholders to consider what these advancements mean for patients in Europe and how we can collaborate to improve access to innovative therapies.

If you have any questions or comments about ASH 2025 and the data, please, contact info@mpeurope.org

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AL amyloidosis phase III clinical trial of birtamimab fails to meet primary endpoint

Ana Vallejo — Mon, 26 May 2025 07:37:15 +0000

Prothena, the pharmaceutical company that produce the AL amyloidosis drug birtamimab, have announced that the Phase III AFFIRM-AL clinical trial failed to meet its primary endpoint – i.e., the main result being measured in the trial to determine whether the treatment was effective. This means that the trial failed to demonstrate that newly diagnosed AL amyloidosis patients, with severe heart involvement (Mayo Stage IV), had an improved survival from taking birtamimab. The AFFIRM-AL trial was also looking at two secondary endpoints, both of which were also not met. These were a 6-minute walk test distance and a Short Form-36 version 2 Physical Component Score. Both secondary endpoints were looking at the impact of birtamimab on patients’ physical function and ability to exercise. In their press release, Prothena announced that they will no longer be developing birtamimab in AL amyloidosis because of the negative results. This includes stopping an open-label extension of the AFFIRM-AL clinical trial. If you have any questions or concerns, please speak to your doctor or nurse. You can also contact MPE at info@mpeurope.org.

What is birtamimab?

Birtamimab is a monoclonal antibody designed to bind to amyloid protein deposits, which accumulate in tissues and organs, leading to damage and eventual organ failure. By engaging the patient’s immune system, it was hoped that birtamimab would work to remove these harmful deposits from affected organs and tissues.

What was the AFFIRM-AL?

The Phase III AFFIRM-AL clinical trial was assessing the safety and effectiveness of birtamimab when given in combination with standard of care (SoC) chemotherapy in 207 newly diagnosed AL amyloidosis patients with Mayo Stage IV disease. Mayo Stage IV is the most severe stage of the disease, where the heart is significantly affected, making it harder for it to pump properly due to protein buildup. Patients either received birtamimab in combination with SoC chemotherapy or placebo with SoC chemotherapy. SoC chemotherapy consisted of cyclophosphamide, bortezomib, and dexamethasone, with use of daratumumab permitted. The “open label” part of the trial refers to a planned extension where patients would be able to receive the birtamimab for an additional 24 months or until the medication became available in their country. This extension of the trial has now been cancelled.

What are the next steps?

As Prothena have indicated they will no longer be developing birtamimab this means clinical trials exploring the drug will be discontinued. MPE will speak to Prothena to understand exactly what this means for patients who are currently enrolled in the clinical trial. In the meantime, if you have any questions or comments please speak to your doctor or nurse. If you have any questions for MPE, please email info@mpeurope.org. You can read the company’s press release here.

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Register now to join the webinar “Living well with AL amyloidosis”

Ana Vallejo — Thu, 08 May 2025 11:50:47 +0000

Myeloma Patients Europe (MPE) will host a webinar on “Living well with AL amyloidosis” on Thursday, 5 June 2025 from 17:00 – 18:00 CEST.

Aimed at AL amyloidosis patients and patient advocates, the webinar will feature presentations on supportive care for patients.

Prof. Dr. Monique Minnema, Haematologist at the University Medical Centre Utrecht, will focus her presentation on managing the symptoms of AL amyloidosis and the side-effects of treatment. This will include topics such as recovering from transplantation and managing pain.

Karin Aarsman, Haematology Nurse Practitioner, also at the University Medical Centre Utrecht, will then present an overview of the role of nurse specialists in assisting patients with living well with AL amyloidosis. This will cover topics such as nutrition and fatigue.

All participants will have the opportunity to participate in a moderated Q&A session.

Meet the experts

Prof. Dr. Monique Minnema, Haematologist, University Medical Centre Utrecht, the Netherlands, 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.

Karin Aarsman is a Nurse Practitioner in Haematology. She is part of the multidisciplinary Amyloidosis team at the UMC Utrecht Center of Expertise in the Netherlands. She thinks enhancing awareness to promote earlier recognition of AL amyloidosis and timely referral is an important mission. In her role, she is committed to delivering personalised care and ensuring close collaboration between the various disciplines involved. She has many years of experience in oncology nursing, haematology and stem cell transplantation.

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MPE at ASH 2024: key research and expert insights on myeloma

Ana Vallejo — Mon, 16 Dec 2024 10:10:56 +0000

At the 2024 American Society of Hematology (ASH) Annual Meeting, Myeloma Patients Europe (MPE) interviewed experts about the most interesting studies and abstracts in myeloma and AL amyloidosis research that were presented during the conference.

Our series of interviews highlights key findings and their impact on patient care:

Dr. Laurent Garderet discusses the IFM2017-03 phase 3 trial analysing a dexamethasone-sparing regimen with daratumumab and lenalidomide for frail patients with newly diagnosed myeloma. He highlights significant improvements in patients’ progression-free survival (PFS) and quality of life.

Dr. Ciara Freeman breaks down the iMMagine-1 phase 2 clinical trial, focusing on CAR-T cell therapy, anitocabtagene autoleucel, and its potential to transform outcomes for myeloma patients.

Dr. Meletios Dimopoulos and Dr. Albert Oriol summarise the Aquila study, which shows promising results for daratumumab monotherapy in patients with high-risk smouldering myeloma.

Dr. Anna Fleischer discusses her abstract on balancing treatment intervals and quality of life in myeloma patients, offering unique patient perspectives and recommendations.

You can also watch the MPE ASH 2024 highlights webinar recording here.

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Myeloma and AL amyloidosis ASH 2024 preview

Ana Vallejo — Fri, 29 Nov 2024 13:05:18 +0000

The American Society of Hematology (ASH) Annual Meeting, the world’s largest haematology conference, will take place from 7 – 10 December in San Diego, United States. It is a very exciting event for the myeloma and AL amyloidosis clinical and patient community, with all the results from the latest and most important research being presented.

Myeloma Patients Europe (MPE) will attend the meeting to learn and share updates about the most significant developments in myeloma and AL amyloidosis. MPE will also meet with members, sponsors, European and US advocacy groups, myeloma doctors, researchers and other stakeholders to discuss ongoing projects and future collaborations.

Stay tuned to our social media accounts (Facebook, LinkedIn, Twitter) for the latest information during the conference. MPE will be filming and posting interviews with leading researchers throughout the Meeting.

MPE will also host an ASH highlights webinar on 18 December at 17:00 CET.

MPE´s Head of Medical Education and Scientific Engagement, Solène Clavreul, is also a co-author on a poster being presented on Sunday, 8 December. The poster is entitled Examining Discrepancies in Perspectives of Healthcare Providers and Patients With Relapsed/Refractory Multiple Myeloma on Novel Therapies Across Diverse Clinical Landscapes: An International Prospective Study. You can find further information here.

PROGRAMME HIGHLIGHTS

The programme for myeloma and AL amyloidosis this year is extensive and rich, with a range of research focusing on the science underlying myeloma and on the anti-myeloma effect of existing and new medicines. Given the extensive programme, it is difficult to summarise every presentation, but MPE believes the following myeloma and AL amyloidosis data will be of greatest interest to patients:

AL Amyloidosis

There will be several presentations on the treatment of AL amyloidosis. In particular, results of the ISAMYP study will be presented. The study conducted in multiples sites in France and Australia is evaluating the efficacy and safety of the combination of isatuximab, pomalidomide and dexamethasone (IsaPd), in AL amyloidosis patients with suboptimal response to previous therapy or at relapse.

Efficacy and Safety of Isatuximab, Pomalidomide and Dexamethasone in Relapsed AL Amyloidosis: Interim Results of the Isamyp Phase 2 Joint Study from the IFM and ALLG. Click here for details. Monday, December 9, 2024: 3:30 PM (GMT-8)

Smouldering myeloma

There are few presentations of interest that will focus on the outcomes of patients with smouldering myeloma. In the years to come, it will be important to understand when it is best to start treatment. The Aquila study is investigating whether daratumumab monotherapy could delay progression to myeloma compared active monitoring in patients with high-risk smouldering myeloma and preliminary results will be presented during the meeting.

Phase 3 Randomized Study of Daratumumab Monotherapy Versus Active Monitoring in Patients with High-Risk Smouldering Multiple Myeloma: Primary Results of the Aquila Study. Click here for details. Monday, December 9, 2024: 11:30 AM (GMT-8)

The CAR PRISM study is investigating, for the first time, the safety and efficacy of the use of Ciltacabtagene Autoleucel (cilta-cel), a BCMA-directed CAR T-cell therapy in patients with high-risk smouldering myeloma, without induction therapy, and will present the results observed in the first 6 patients of the study.

Early Safety and Efficacy of CAR-T Cell Therapy in Precursor Myeloma: Results of the CAR-PRISM Study Using Ciltacabtagene Autoleucel in High-Risk Smouldering Myeloma. Click here for details. Monday, December 9, 2024: 4:30 PM (GMT-8)

Myeloma

There will be several talks dedicated to the treatment of newly diagnosed myeloma. As tolerance to treatment vary among patients, the IFM2017-03 study is investigating the efficacy and safety of the daratumumab, lenalidomide and dexamethasone combination without long term dexamethasone compared to a lenalidomide and dexamethasone combination with long term dexamethasone in a frail population of patients with newly diagnosed myeloma. Positive results may lead to a decreased use of dexamethasone and therefore an improved quality of life for patients.

The IFM2017-03 Phase 3 Trial: A Dexamethasone Sparing-Regimen with Daratumumab and Lenalidomide for Frail Patients with Newly-Diagnosed Multiple Myeloma. Click here for details. Monday, December 9, 2024: 11:45 AM (GMT-8)

Some results of the MajesTEC-5 study on the addition of teclistamab to daratumumab-based induction regimens before stem cell transplant will be presented. These combinations are hoped to increase long-term disease-free survival of newly diagnosed myeloma patients.

Phase 2 Study of Teclistamab-Based Induction Regimens in Patients with Transplant-Eligible (TE) Newly Diagnosed Multiple Myeloma (NDMM): Results from the GMMG-HD10/DSMM-XX (MajesTEC-5) Trial. Click here for details. Sunday, December 8, 2024: 9:30 AM (GMT-8)

The ASH congress will also see a range of oral and poster presentations exploring the role of CAR T-cell therapies and bispecific antibodies used as single agents or in combination with already approved treatments, and newly developed trispecific antibodies in the treatment of relapse refractory myeloma.

Phase 2 Registrational Study of Anitocabtagene Autoleucel for the Treatment of Patients with Relapsed and/or Refractory Multiple Myeloma: Preliminary Results from the IMMagine-1 Trial. Click here for details. Monday, December 9, 2024: 5:30 PM (GMT-8)
Efficacy of Elranatamab (ELRA) in Combination with Carfilzomib (CFZ) and Dexamethasone (DEX) in the Phase 1b MagnetisMM-20 Trial in Relapsed or Refractory Multiple Myeloma (RRMM). Click here for details. Monday, December 9, 2024: 5:15 PM (GMT-8)
First Results of a Phase 1, First-in-Human, Dose Escalation Study of ISB 2001, a BCMAxCD38xCD3 Targeting Trispecific Antibody in Patients with Relapsed/Refractory Multiple Myeloma (RRMM). Click here for details. (GMT-8)

Results on other types of treatments will be also presented. If approved, these new agents and combinations will provide more treatment options for relapse refractory myeloma patients. In particular, the results of a study investigating the safety and efficacy of the Cereblon E3 ligase modulatory drug (CELMoD) mezigdomide (a new generation of IMID) in combination with dexamethasone and bortezomib or carfilzomib will be presented.

Mezigdomide (MEZI) Plus Dexamethasone (DEX) and Bortezomib (BORT) or Carfilzomib (CFZ) in Patients (pts) with Relapsed/Refractory Multiple Myeloma (RRMM): Updated Results from the CC-92480-MM-002 Trial. Click here for details. Monday, December 9, 2024: 5:30 PM (GMT-8)

The safety and efficacy results of a new oral agent called inobrodib will also be presented. Inobrodib is a small molecule inhibitor drug which disrupts the growth of cancer cells. This treatment could provide patients with an oral-only treatment option at late treatment lines.

Tolerability and Clinical Activity of Novel First-in-Class Oral Agent, Inobrodib (CCS1477), in Combination with Pomalidomide and Dexamethasone in Relapsed/Refractory Multiple Myeloma. Click here for details. Monday, December 9, 2024: 5:00 PM (GMT-8)

As treatment options can become burdensome for patients and leading to cumulative side effects, it is important to understand when it is safe to stop treatment to preserve quality of life and clinical outcomes. A study conducted in Germany investigated patients’ preferences on treatment free intervals to better tailor treatment plans to patients’ needs and desires.

Balancing Treatment Intervals and Quality of Life in Multiple Myeloma Patients: Patient Perspectives and Recommendations. Click here for details. Saturday, December 7, 2024: 2:15 PM

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