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.

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EU Public Health Programmes

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

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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

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Two milestones in EU Rare Disease Policy

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

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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