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.