2026 European Conference on Rare Diseases & Orphan Products (ECRD)

The next ECRD will be held on 3 & 4 June 2026 in Prague and will be titled “Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases”. 

The European Conference on Rare Diseases & Orphan Products (ECRD) is the largest patient-led policy-shaping event on rare diseases in Europe.

By bringing together people living with rare diseases and patient advocates alongside policymakers, healthcare industry representatives, clinicians, regulators, and Member State officials, EURORDIS leverages the strength of this unique network to advance goal-driven policies that improve the lives of people living with a rare disease and their families.

ECRD 2026 is expected to unite over 500 participants in Prague, with an additional 300+ joining online. Thanks to its hybrid format, the conference will provide an unparalleled platform for connection and collaboration, enabling participants across the rare disease community to exchange knowledge, share experiences, and build partnerships.

ECRD 2026 will also mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases. Through open dialogue, participants will help shape a roadmap that defines shared priorities, structure, governance, funding, and delivery mechanisms.

This collaborative process will ensure collective ownership and lasting impact across Europe, while strengthening Europe’s role as a key contributor to the WHO Global Action Plan on Rare Diseases.

The event will delve into the most pressing discussions on the future of Europe and medicines, exploring the multifaceted challenges and opportunities for the rare disease ecosystem. The programme will cover a broad range of policy topics, including therapy development, timely and accurate diagnosis, advances in social sciences, specialised healthcare, and health technology assessments.

By participating in ECRD 2026, you will play an active role in shaping the future of rare disease policy in Europe and beyond—helping to drive real, lasting change for millions of people living with a rare disease.