Theme: “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 Europe’s largest patient-led policy-shaping event dedicated to rare diseases. Organised by EURORDIS, it brings together people living with rare diseases, patient advocates, policymakers, healthcare professionals, industry leaders, regulators, and Member State representatives to advance impactful policies and initiatives.
In 2026, the conference will take place in Prague, welcoming over 500 participants onsite and 300+ online through a hybrid format that promotes connection, knowledge exchange, and collaboration across the rare disease community.
ECRD 2026 will also mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases, defining shared priorities, structure, governance, funding, and delivery mechanisms — ensuring collective ownership and lasting impact across Europe.
The programme will address key topics such as:
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Therapy development and access to innovation
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Timely and accurate diagnosis
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Advances in social sciences and specialised care
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Health technology assessment and sustainable healthcare policies
By joining ECRD 2026, you will take part in shaping the future of rare disease policy in Europe and beyond, contributing to real, lasting change for millions of people.
👉 Learn more and explore outcomes from past ECRDs on the official ECRD website