Myeloma Patients Europe

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België
Bruxelles / Brussel
Myeloma Patients Europe

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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 projects 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’.

27/10/2026

Did you miss our webinar on the long-term outcomes of CAR T-cell therapy in myeloma? You can now watch the full recording.

Dr Hermann Einsele from the University of Würzburg explains the long-term efficacy and safety data from clinical trials. David Williams, a myeloma patient who had CAR T-cell therapy three years ago, shares what recovery, long-term monitoring and side-effect management have meant for him.

Watch the recording and all our other webinars on our YouTube channel:

26/10/2026

“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.”

Jackie’s story shows why recognising AL amyloidosis sooner matters.
Thank you, Jackie, for sharing your experience of a challenging diagnosis.

To help GPs and family doctors recognise AL amyloidosis sooner, MPE has developed the Amyloidosis Diagnosis Pathway with our expert medical advisory committee.

Download it and share it with your GP or family doctor:

https://www.mpeurope.org/wp-content/uploads/2025/10/MPE-Amyloidosis-Diagnosis-Pathway_2025.pdf

26/10/2026

“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.”

Jackie’s story shows why recognising AL amyloidosis sooner matters.

Thank you, Jackie, for sharing your experience of a challenging diagnosis.

To help GPs and family doctors recognise AL amyloidosis sooner, MPE has developed the Amyloidosis Diagnosis Pathway with our expert medical advisory committee.
Download it and share it with your GP or family doctor:
https://www.mpeurope.org/wp-content/uploads/2025/10/MPE-Amyloidosis-Diagnosis-Pathway_2025.pdf

26/10/2026

Today is World Amyloidosis Day.
In the last week, we have shared how long it can take for people with AL amyloidosis to be diagnosed. Months of waiting, multiple specialists and repeated appointments are unfortunately all too common across Europe.

Today we are asking everyone to download the MPE Amyloidosis Diagnosis Pathway and share it with their GP or family doctor. The pathway sets out the signs, symptoms and tests that can help GPs and family doctors recognise AL amyloidosis sooner.

The pathway is also available to download in Spanish.

Please visit https://www.mpeurope.org/world-amyloidosis-day-help-your-doctor-spot-al-amyloidosis-sooner to download and share those versions.

24/10/2026

Today our Portuguese member, Portuguese Association against Leukemia ( ) held a session on shared decision-making (SDM) at their 7th National Conference bringing together hematologists, nurses, researchers, policy makers, patients and caregivers in the same room.

The session included:

- A presentation on the results of MPE’s SDM research project

- The launch of our new pilot study disseminating a patient-friendly SDM flyer in Portugal

- A multistakeholder panel discussion on what good shared decisions look like in practice

- This session was held as part of our ongoing work to improve conversations between healthcare professionals and patients about their treatment and care decisions.

23/10/2026

This Monday (26 October) is World Amyloidosis Day, and MPE research found that 56% of people with AL amyloidosis who completed our survey had five or more medical consultations before diagnosis and 43% had more than six.

Unfortunately, this is very common for people with AL amyloidosis. Yet a timely diagnosis matters: the earlier treatment starts, the better the chance of limiting organ damage and improving survival.

22/10/2026

MPE's Advocate Development Programme graduates Jackie and Bronagh share how the ADP helped them build confidence and understanding ahead of .

Learn more or apply for next year's ADP programme before November 2nd.

www.mpeurope.org/what-we-do/capacity-building-advocacy/advocate-development-programme

22/10/2026

MPE's Advocate Development Programme graduates Jackie and Bronagh talk about how the ADP course helped them gain greater confidence and understanding ahead of .

Find out more or apply for next year's ADP programme before November 2nd.

https://www.mpeurope.org/what-we-do/capacity-building-advocacy/advocate-development-programme/

22/10/2026

Do you know the signs and symptoms of AL amyloidosis?

Our AL amyloidosis infographics explain what AL amyloidosis is, the signs and symptoms to look out for, why it can be so hard to diagnose and how it relates to myeloma.

They are free to download and share, with editable versions available in 9 languages so patient groups can use them in their own communities.
The more people who recognise the signs, the sooner people with AL amyloidosis can be diagnosed.

is on Monday 26 October

https://www.mpeurope.org/european-myeloma-day/al-amyloidosis-infographics/

21/10/2026

World Amyloidosis Day is on 26 October. Even after seeking help, the road to an AL amyloidosis diagnosis can be long. It is a very rare condition.

MPE surveyed people with AL amyloidosis and found.

47% of people with AL amyloidosis who completed our survey told us their diagnosis took FIVE months or more and 22% of those waited over a year.

Almost half of the people with AL amyloidosis who completed our survey (47%) saw FOUR or more specialists before they were diagnosed and 14% saw more than SIX.

AL amyloidosis can affect different organs, so people are often passed between specialists before the cause of their symptoms is found - 14% saw more than SIX.

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

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Avenue Louise 143/4
Brussels
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Site Web

http://www.mpeurope.org/

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