Myeloma Patients Europe

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Myeloma Patients Europe

Myeloma Patients Europe is an umbrella organisation of myeloma and AL amyloidosis patient groups

Myeloma Patients Europe (MPE) is an umbrella organisation of myeloma patient groups and associations from across Europe. MPE was formed following the merger in 2011 of the European Myeloma Platform and Myeloma Euronet. MPE is registered as a non-profit organisation (AISBL) under Belgian law and its headquarter is located in Brussels. MPE has a number of broad aims including:
• Collaborating on pro

jects to the benefit of the myeloma community
• Exchanging information and best practice
• Developing existing patient groups and encouraging and facilitating the setting up of new groups
• Helping to shape appropriate health- related policies and initiatives on a European and national level
• Ensuring patients across Europe receive timely access to new treatment
• Stimulating and promoting patient- centred research and clinical trials
• Developing a strong evidence base for the needs and wants of patients and their role in research
• Providing information, educational and outreach programmes to member groups

To meet its aims and in addition to its membership, MPE works directly with healthcare professionals, reimbursement authorities, regulators, politicians, pharmaceutical companies, the media and anyone involved in the ‘myeloma community’.

24/08/2026

Myeloma is often diagnosed late because its early symptoms — back pain, fatigue, recurrent infections, anaemia — are easily attributed to other, more common conditions.

Raising awareness of the signs of myeloma can lead to earlier diagnosis and better outcomes. If you know someone experiencing these symptoms, particularly an older adult, encourage them to speak to their GP and ask specifically about myeloma and other blood cancers.

Look out for more information on this topic during September and for this year's European Myeloma Day on Sunday 27 September!

17/08/2026

Living with myeloma can mean encountering a lot of conflicting information. One source says one thing, another says something different, and it can be hard to know what to trust, particularly online.

This is understandable. Myeloma is complex, research moves quickly, and what is true for one person may not apply to another.

Swipe for a few ways to navigate conflicting information, and remember, when in doubt, always check with your healthcare team or visit our website.

13/08/2026

Have you heard this myth before?
Join us on 17 September 2026, from 7:00–8:00 PM CEST, as we discuss treatment-induced menopause and sexual health in young myeloma patients.
Register for the MPE European Young Myeloma Patients Group (EYMPG) meeting here: https://forms.cloud.microsoft/e/ZSFF1cRJdi

12/08/2026

Staying connected to others is an important and often underestimated part of living well with myeloma.

Social isolation and loneliness can be real challenges, particularly during treatment or recovery. Connecting with others who understand what you are going through can make a significant difference.

Ways to find support:
- Ask your healthcare team whether there is a peer support or patient group available through your hospital or treatment centre.
- Contact your local MPE member organisation, many run support groups, helplines, one-to-one peer support programmes or will simply understand what you are going through.
- If you are a younger person living with myeloma, the European Young Myeloma Patients Group may be a good community for you.
- Online communities and digital chat groups can also provide support, particularly if local options are limited.

Find your local organisation: https://f.mtr.cool/qxowqilsyb

11/08/2026

"Through ADP, I learned how to translate personal experience into meaningful advocacy. It helped me turn vulnerability into strength and use my story to create awareness and change."

— Wouter Rutten, 2025 ADP Graduate

Applications for next year's Advocate Development Programme open in October 2026. Keep an eye on our channels to find out how you can apply.

10/08/2026

Access to innovative myeloma treatments varies significantly across Europe. Where you live can affect which therapies are available to you, how quickly new treatments are approved, and whether you can access a clinical trial.
If you feel you may not be accessing the best available treatment options:

-Ask your haematologist directly what the most current standard of care is for your situation, and whether everything available to you is being considered.
-Use the MPE Myeloma Access Atlas to understand the treatment landscape in your country.
-Consider seeking a second opinion at a specialist myeloma centre.
-Talk to your local MPE member organisation — they can often advise on access routes and patient rights in your country.

Myeloma Access Atlas: https://f.mtr.cool/fexeeipnnj

07/08/2026

"I was 41 when I underwent my transplants. Menopause was hardly discussed before or after treatment. It became difficult to know which symptoms were caused by menopause, the transplants or graft-versus-host disease (GvHD). The allogeneic transplant changed my intimate life."

— Shared anonymously by a young myeloma patient

This patient's experience highlights the need for better conversations around menopause and sexual health throughout diagnosis and treatment. These topics can have a profound impact on quality of life but are often overlooked.

Were menopause and sexual health discussed as part of your treatment or follow-up care?
What support do you wish had been available?

Share your experience below or send us a private message if you'd like us to share your story anonymously.

Or, simply register for our next EYMPG meeting here, where we will cover this exact topic: https://f.mtr.cool/smbkubbczt

06/08/2026

"Participating in the ADP programme with MPE during 2025 gave me insight into the complex world of myeloma. It equipped me with the knowledge and skills to advocate for those living with myeloma. The programme changed me as a person. I became less fearful for the future and I focused on living well with myeloma."

— Bronagh Scott, 2025 ADP Graduate

Applications for next year's Advocate Development Programme will open in October 2026. Be sure to follow us for more information later this year.

05/08/2026

Fatigue is one of the most common and most disabling symptoms for people living with myeloma. It is different from normal tiredness — it does not always improve with rest, and can affect every aspect of daily life.

What can help:
- Manage your schedule — plan your most important tasks for the time of day when your energy is highest.
- Accept help when it is offered, and ask for it when you need it.
- Be open with your family and friends about how fatigue is affecting you — they may not realise the impact.
- Tell your healthcare team how fatigue is affecting your quality of life.
- Ask whether there are any treatable causes of your fatigue, such as anaemia, that might be addressed.

Read our myeloma patient guide: https://www.mpeurope.org/what-we-do/educational-resources/guides/

03/08/2026

Knowing your rights as a patient can make a real difference to the care you receive. In many countries across Europe, patients have the right to a second opinion, access to their medical records, and involvement in decisions about their treatment.

Swipe for practical advice on how to take ownership of your care.

Find your local member organisation: https://www.mpeurope.org/about-mpe/our-members/

Adresse

Avenue Louise 143/4
Brussels
1050

Site Web

http://www.mpeurope.org/

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