Patients’ priorities and needs for rare disease research

The following paper outlines the priorities for rare disease research (RDR) that EURORDIS, the European Organisation for Rare Diseases, has identified for the decade ahead.

On behalf of patients affected by rare diseases in Europe, EURORDIS urges public decision-makers to take stance in advancing rare disease research on the eve of the adoption of the 8th EU Research Framework Programme 2014–2020 and the National Plans or Strategies on Rare Diseases, which European governments are engaged to adopt prior to 2013.

 
 
The voice of rare disease patients in EuropeEURORDIS Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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