Patient Voices at EHA 2026 Congress

by Hannah Mobarak, IWMF Global Partner Manager (pictured on far right with Dina Steagall and Prof. Shirley D’Sa)

Stockholm, Sweden

This year, the European Hematology Association brought the global hematology community to Stockholm, Sweden. Around 18,000 clinicians, researchers, industry representatives and patient advocates gathered to discuss the latest developments in blood disorders and blood cancers — from new research and clinical trials to the everyday realities of people living with these conditions.

Although EHA is primarily a scientific and medical meeting, one of the most encouraging themes this year was the visibility of patients and patient organisations. Many sessions explored not only how to treat disease, but how to listen better, communicate more clearly and ensure that medical progress translates into better quality of life.

Click image to play video of Dr. Simone Ferrero, Universita di Torino, Physician-Scientist and Hematologist, discussing WM research

Why Patient Experience Data Matters

A particularly powerful session focused on how patient experience data can inform the approval of new medicines. The message was simple but important: survival statistics alone do not tell the full story. A treatment may help people live longer, but patients also need to know how it may affect their symptoms, energy, independence, emotional wellbeing and day-to-day life.

Speakers and patient advocates stressed that patient experience should be built into research from the start, not added as an afterthought. When this data is collected and valued, it gives developers, researchers and regulators — including bodies such as the FDA and EMA — a fuller picture of what a medicine means for the people who may receive it.

For patients, this is a reminder that your experience is evidence. How you feel, which side effects you can tolerate, what matters most to you and how treatment affects your daily life are all vital parts of the conversation.

At the European Hematology Association (EHA) 2026 Congress in Stockholm, one message came through loud and clear: patient voices matter.

Better Conversations Between Patients and Healthcare Teams

A panel session on patient communication opened the floor to patient advocates and clinicians. When asked what patients most value, the answers were clear: honesty, transparency and straightforward information, delivered with kindness, empathy and respect.

One important point was that good communication does not always require longer appointments. Listening carefully, checking what a patient already understands, and making time for their questions can make a significant difference. The session also acknowledged that communication styles vary across countries and cultures, but the need for clarity and compassion is universal.

A simple and practical tip for patients was to bring a notebook to appointments: use the front for notes from your healthcare team and the back for your own questions. Starting the appointment with your questions can help make sure the issues that matter most to you are addressed.

Perhaps the most memorable reminder was that appointment time is not only time for clinicians — it is the patient’s time too. Patients should feel able to speak, ask questions and share what is happening in their lives, not just in their test results.

Hannah also had the chance to connect with key partners and experts, strengthening international ties across the WM and blood cancer community.

Collaboration Across the Patient Community

The congress was also a valuable opportunity to meet industry professionals and connect with other patient advocacy organisations supporting people affected by CLL, acute leukemia, follicular lymphoma and other blood cancers. These conversations reinforced a shared goal: patients should be at the heart of decision-making, empowered with reliable information from their healthcare teams and able to access the medicines and support they need.

In-person networking made it possible to strengthen international connections, including with Abrale, the blood cancer association in Brazil. It was a pleasure to meet Dina Steagall, Vice-President of Abrale, and to connect her with Professor Shirley D’Sa, who had recently visited hospitals in Brazil to speak with local physicians about Waldenstrom macroglobulinemia.

These partnerships matter because progress is faster and stronger when patient groups, clinicians, researchers and industry work together towards the same aim: improving the lives of patients and families worldwide.

Click image to play video of Dr. Dina El-Sharkawi, Hematologist at Royal Marsden Hospital, London, discussing a promising future for WM patients

Looking Ahead

It was inspiring to see so many familiar faces and leading experts in Waldenstrom macroglobulinaemia at the congress. We are especially grateful to the specialists who recorded videos for the patient community, helping make expert knowledge more accessible beyond the congress halls. This included Dr Simone Ferrero, Dr Tina Bagratuni, Prof Monique Minnema, Prof Christian Buske, Dr Dima El-Sharkawi and Dr David Moreno, who recorded messages in English and in their native languages — Italian, Greek, Dutch, German and Spanish — so their insights could reach as many people as possible. Visit our YouTube Playlist to hear more.

Thank you to the EHA team for an exceptionally well-organised congress and, importantly, for continuing to include patient organisations in these conversations. My takeaway from Stockholm was clear: advances in hematology matter most when they are shaped by, and delivered for, the people living with blood disorders every day.

Hannah Mobarak
IWMF Global Partner Manager

The IWMF has its headquarters in the USA, and it has global partners in Argentina, Australia, Belgium, Canada, Chile, China, Finland,  France, Germany, India, Ireland, Israel, Italy, Mexico, the Netherlands, New Zealand, Portugal, Scandinavia, South Africa, Spain, Taiwan, and the UK.

Learn more about our Global Partners across the world.

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