Interview with EHA’s European Affairs Committee Member, Ariane Weinman
Ariane Weinman is one of two EHA Patient Advocacy Committee (PAC) representatives on the European Affairs Committee. She is a Public Affairs Senior Manager at EURORDIS (Rare Diseases Europe), an umbrella patient organisation that she joined 22 years ago. At EURORDIS, Ariane discovered a very inspiring community that taught her a lot about research in rare diseases, and life. Since June 2026, she officially brings her passion and insights to this Committee.
How do you view your role in the European Affairs Committee?
I am honoured to be part of the EAC Committee and learn from highly specialised hematologists as well as from my fellow patient advocates, notably Kate Morgan and Natacha Bolanos. My motivation is to humbly contribute to this collective effort and convey the needs and expectations of patients living with rare hematological diseases, including blood cancers.
Research and care for patients with rare diseases comes with unique challenges, ranging from difficulties to diagnose patients and conduct trials in rare indications, to insufficient available data, lack of funding and commercial interest, and disparate access to therapies.
From your perspective, what should be prioritized?
Rare and even ultra-rare diseases are prevalent in hematology, which creates additional challenges around access, research and regulatory developments. EHA’s advocacy goals address these unmet needs and concerns. EHA needs to continue being active in research as well as throughout every step of the patient journey. To date, European patients are still facing striking inequalities in access to appropriate healthcare.
Which European policy files do you consider important for patients?
EURORDIS currently engages with policymakers on a variety of EU files impacting patients with rare diseases. The EU Biotech Act, introducing measures to boost the development of biotech pharmaceutical products, as well as critical amendments to the existing Clinical Trials Regulation. We’re also following the Critical Medicines Act, which will prevent shortages of therapies for which there are no or limited alternatives, and the revision of the Pharmaceutical Legislation, the Life Sciences Strategy, HTA legislation, the European Health Data Space, and Cross-Border Healthcare… a lot is happening!
The goal is ensuring fair and equal access to treatment wherever patients live in Europe, as well as patient-centered measures.
How does EU advocacy have an impact?
As the European Union continues to set rules impacting patients, healthcare professionals, and industry – our advocacy is crucial. EU policymakers need to hear from patients, so that they can make the right decisions for them.
A European approach is actually very beneficial in the field of rare diseases. Due to the rarity of each individual disease, no country can tackle the challenges of rare diseases alone. This is why joining forces is of utmost importance: to pool expertise and resources across borders, foster research, and improve access to timely diagnosis, care and treatment, as well as follow-up care and mental health support. Ultimately, we want more cures and a better quality of life for people living with a rare disease.