In just a few days (June 3rd–4th, 2026), Prague's O2 universum will welcome five hundred delegates from across the continent for the European Conference on Rare Diseases & Orphan Products (ECRD 2026). Organized by EURORDIS, this is Europe’s largest patient-led event shaping rare disease policy. It brings together patients, policymakers, clinicians, and industry leaders under one roof. HAE Junior will be right there in the center of the action.
How do we ensure the unmet needs of people with rare diseases aren't overlooked in a rapidly changing Europe? That is the core question of this year's conference. HAE Junior believes the best way forward is to share real, everyday patient experiences directly with those who decide on regulations and treatments. To do just that, the organization is contributing to the conference programme.
On Thursday, June 4th (09:00–10:30 CEST), HAE Junior Chairwoman Camelia Isaic will join the panel discussion "A State of the Art of the HTA Regulation." This is a critical topic for patient families. These health technology assessments (HTAs) ultimately decide how fast modern treatments get approved and covered by public health insurance. A key focus of the panel will be finding ways to meaningfully involve patients in these vital decision-making processes.
HAE Junior’s work will be visible throughout the entire ECRD venue. The organization is proud to present its scientific and advocacy poster: "Unmet needs and systemic challenges of HAE pediatric patient families in Europe," which maps out the daily barriers and specific needs faced by families of young HAE patients across Europe.
A second poster will be presented under the auspices of ČAVO (Rare Diseases Czech Republic), titled: "Raising Awareness and Shaping Policy on Plasma-Derived Medicinal Products: A Patient Advocacy Case Study." This case study looks at the work of a dedicated plasma protein user working group focused on raising awareness about life-saving therapies made from human blood plasma.
To balance out the data and policy-making debates with human emotion and pure joy, the conference will also host a curated selection from a unique art exhibition, "My Inspiration." Attendees will get a glimpse into the inner worlds, dreams, and incredible creativity of the youngest HAE patients. It is a powerful reminder that behind every regulation and approved drug are real children with real talents. This exhibition has already been successfully displayed for raising awareness at other international conferences and of the Medical Faculty in Hradec Králové.
ECRD 2026 is expected to serve as a key milestone in the multi-stakeholder process towards the launch of a European Blueprint for Rare Diseases — designed to foster collective ownership and lasting impact across Europe, while strengthening Europe’s contribution to the WHO Global Action Plan on Rare Diseases.
The programme covers everything that directly impacts the quality of life for young patients, from the development of new therapies and quicker access to treatment, to early diagnosis, holistic care, and mental health support.
While the in-person event in Prague is completely sold out, online registration remains open right up until the opening remarks. To make the conference as accessible as possible, all sessions will feature closed captioning and live translation into more than 60 languages. Along with the 500 people on-site, another 300 participants are expected to join online.
Make sure to follow HAE Junior on social media (Facebook, Instagram, LinkedIn) during the first week of June for live updates under the hashtag #ECRD2026!
You can send your financial donation also to our bank account 2001782429/2010.
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