Save the date for the 13th edition of the European Conference on Rare Diseases & Orphan Products (ECRD 2026) planned for 3-4 June, 2026. the even will be in held in-person in Prague and online.

ECRD is the largest, patient-led policy-shaping conference for rare diseases in Europe. ECRD is an instrumental tool to achieve policy objectives for people living with a rare disease. The overarching title of ECRD 2026 is: Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases

 

ECRD 2026 will mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases. Discussions will support the shaping of a roadmap—defining priorities, structure, and shared objectives. Sessions will play a key role in co-creating the plan and aligning on governance, funding, and delivery. This collaborative process ensures collective ownership and long-term impact across Europe, in turn, helping to position Europe as a key contributor in the development of the WHO Global Action Plan on Rare Diseases.

 

The conference is estimated to gather 500 people in-person at the O2 Universum in Prague and a further 300+ participants online: patient advocates, academics, health care professionals, healthcare industry, payers, regulators, Member State representatives and policy makers.

 

The 13th edition of this important conference for the rare disease community will be organised by EURORDIS-Rare Diseases Europe, co-organised by Orphanet, and supported by AFM-Telethon and funds raised through registration fees and corporations.