Committees and Working Groups

Committees and Working Groups are constituted to govern the organisation and push forward policy change in specific areas selected as priority topics by the Council of RDI.

The purpose, specific objectives, deliverables and timeframe of the Standing Committees and Working Groups are spelled out in the Terms of Reference of each Group.

Advocacy Committee

The Advocacy Committee shall be responsible for developing and recommending priorities, initiatives and policies for the Organisation; for preparing position papers or statements or declaration, as well as to review any position, statement, declaration of petition considered for endorsement by the Organisation

 Working Group on Rare Disease Research

The Working Group on Research will be responsible for feeding RDI’s position on research and steering all research-related activities of the Organisation.

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.European Conference on Rare Diseases 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