ECRD 2026: Shaping the future of Rare Disease policy in Europe

Organised by EURORDIS – Rare Diseases Europe, the ECRD is the largest patient-led policy-shaping conference in the rare disease field. It brings together people living with rare diseases, patient advocates, policymakers, clinicians, regulators, payers, and industry representatives to develop practical solutions that improve the lives of patients and their families.

The 2026 edition will welcome over 500 participants in Prague and 300 online, offering a hybrid format to encourage wide participation and collaboration. The conference will also mark the launch of a multi-stakeholder process to develop a European Action Plan for Rare Diseases, reinforcing Europe’s leadership and alignment with the WHO Global Action Plan on Rare Diseases.

Programme and Main Sessions

The conference will feature over 100 expert speakers across six key tracks:

• Therapies, development, and access
• Diagnosis, research, and prevention
• Social sciences and holistic care
• Specialised healthcare
• Health technology assessments (HTA)
• Mental health, social, and holistic care

Poster abstract submissions are open until 6 March 2026, inviting patient groups, clinicians, and researchers to present their work in rare diseases or public health. Selected posters will be showcased during ECRD 2026 to highlight new research and innovation. Submit your abstract here. 

Towards a European Action Plan for Rare Diseases

ECRD 2026 will be a defining moment for rare disease policy in Europe, taking place five years after Rare2030 and midway to the 2028 WHO Global Plan target. It aims to unite the community to co-develop an EU Action Plan or Strategic Framework for Rare Diseases, fostering shared ownership and accountability among stakeholders.

Learn More

ECRD 2026 will be a pivotal moment for shaping rare disease policy in Europe. Registration details and programme updates will be available on the ECRD website, click here.