Myeloma Patients Europe

13/11/2025

Our MPE team wrapped up a busy, but insightful week at the ISPOR Europe conference in Glasgow, Scotland, participating in a range of sessions from access through to quality of life and patient preference methodologies.

A key topic arising from discussions at this year’s conference was the impact that recent drug pricing approaches in the US market will have on medicines pricing in Europe. Whilst there are many unknowns, MPE will be closely following the topic to determine the impact on patients.

Key highlights from our team's involvement include:

Eilidh Duncan presenting on capturing emerging side effects from CAR-T and bispecific therapies not currently included in patient-reported outcomes (PROs)

Silene Ten Seldam sharing SISAQOL-IMI Comms patient and healthcare professional checklists, co-developed to support meaningful review of PRO strategies in clinical trial protocols

Kate Morgan presenting on innovative drug pricing schemes, emphasising that pricing innovations must facilitate access, not delay it, and patients need long-term, stable access to medicines that improve outcomes.

Our team also got to catch-up with friends and colleagues from across patient advocacy and healthcare to share projects and discuss topical issues affecting patients. It was so nice to see you all.

Thank you to ISPOR—The Professional Society for Health Economics and Outcomes Research for bringing together the global health economics and outcomes research community and for involving patients.

We look forward to next year.

12/11/2025

Myeloma can sometimes reduce how well your kidneys function, so it is important to drink a lot of fluids to help your kidneys work well – 2 to 3 litres (or 3 to 5 pints) of water per day is recommended.

Find out more in our publication Myeloma - A Patients' Guide:https://www.mpeurope.org/wp-content/uploads/2023/01/Myeloma-Patients-Guide.pdf

10/11/2025

How is myeloma diagnosed? Our myeloma diagnosis pathway gives an overview of what healthcare professionals will look for.

Read our summary guide here: https://f.mtr.cool/yvtyglmfdf

Produced in collaboration with

07/11/2025

07/11/2025

This week we had the chance to get the MPE team and board together in Munich, Germany 🤝

We spent three days looking at some key organisational priorities - such as refining our research strategy to ensure that patient evidence is driving improvements in treatment, care and access and how we can amplify MPE's tools, educational resources and research to best serve our mission.

The MPE team is made up of people living and working all around Europe so these face-to-face collaborations really help us to build a strong and well-structured organisation to make a bigger impact for myeloma patients across Europe.

05/11/2025

- Self-care is not selfish. Whether it is reading a book, spending time with loved ones, or simply resting, make time for activities that bring you joy and peace. Your mental wellbeing is just as important as your physical health.

03/11/2025

- As we reach November and move into winter, remember to take extra care to prevent infection.
Regular hand washing, avoiding crowds when possible and keeping up with recommended vaccinations can help protect your health.

Find out more about reducing your infection risk when living with myeloma
https://f.mtr.cool/jnuyrheyro

28/10/2025

- Have you explored our Treatment Navigator? This tool helps you find and locate clinical trials and treatment options for almost 50 countries. You can use the navigator to help ask the right questions and have informed discussions with your healthcare team.

https://f.mtr.cool/mhzwlnbazq

27/10/2025

Myeloma is a relapsing-remitting cancer, meaning patients may experience periods of remission followed by relapse. Understanding your disease course helps you prepare and make informed decisions with your healthcare team. Find out more on myeloma treatment.

https://www.mpeurope.org/treatment-of-myeloma/

26/10/2025

AL amyloidosis is one of many types of amyloidosis. This is a rare, but serious condition where abnormal proteins accumulate in organs, causing them to malfunction. It can affect the heart, kidneys, liver, and nervous system.
Because it is so rare and symptoms can be vague, diagnosis is often delayed, or it can be confused for something else. On average, patients see multiple doctors before receiving the correct diagnosis.
Raising awareness helps more people recognise symptoms earlier and seek appropriate medical care. Find out more by reading our infographic on the signs and symptoms AL amyloidosis:
https://f.mtr.cool/bvqujsfhvv

26/10/2025

Partnership with Myeloma UK

Anna knew something was not right. She was experiencing constant fatigue, unexplained pain, and regular infections.
Like many patients, Anna faced delays, uncertainty, and the challenges of navigating a complex healthcare system whilst feeling unwell. Some of her symptoms seemed like signs of getting older, while others were harder to explain. After a long time and several doctor visits, she received a diganosis of AL amyloidosis.

Anna’s advice: get your symptoms checked out! Watch her story and comment below if you are surprised or can relate to this yourself.

26/10/2025

Today is World Amyloidosis Day.

Amyloidosis is a group of rare and serious conditions affecting multiple organs. Early diagnosis is crucial to avoid organ failure.

That’s why we have developed a diagnosis pathway to help patients obtain a diagnosis as early as possible. Discover our pathway to diagnosis here:
https://f.mtr.cool/hrcftmgtos

Together with , and other patient organisations we are raising awareness and advocating for better access to diagnosis and treatment across Europe.