EURORDIS Contribution to the European Commission Public Consultation on the Revision of the “Clinical Trial Directive”

EURORDIS, the European Organisation for Rare Diseases, represents today 502 rare disease organisations from 45 countries, 25 of which are EU Member States, and thereby reflects the voice of an estimated 29 million patients affected by rare diseases in the European Union.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. 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