EU Policy Framework

Key legislative texts, expert committees and funding bodies contribute to the EU rare disease policy framework


EU Joint Actions on Rare Diseases and on Rare Cancers

Involving a broad range of stakeholders across Europe to shape policies, make recommendations aimed at ultimately improving the lives of patients.


EU Public Health Programmes

The European Commission has developed a coordinated approach to the challenge of rare diseases.


The European Commission Expert Group on Rare Diseases

The group's mission is to support EU policy for rare diseases. It has adopted key recommendations on centres of expertise, ERN, patient registries and more.


EC Communication and Council Recommendation on Rare Diseases

The Commission Communication and Council Recommendation establish a strategy for meeting the challenge of rare diseases.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases