EU Policy Framework

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


Rare cancers

Rare cancers are rare occurrences of a common disease affecting less than 6 per 100,000 individuals a year, or one in five new patients diagnosed with cancer.


EU Public Health Programmes

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


Major Recommendations shaping RD policy

The EU Committee of Experts on Rare Diseases (EUCERD, 2010-2013) and the European Commission Expert Group on Rare Diseases (CEG-RD, 2013-2016) were established to support EU policy on rare diseases


Two milestones in EU Rare Disease Policy

The Commission Communication and Council Recommendation have established 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