Working Groups

Working Groups are constituted to push forward policy change in specific areas selected as prioritised topics by the Council of RDI. Working Groups will participate in organising and contributing to topic-specific campaigns, workshops and meetings.

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

The Council of RDI is currently seeking expressions of interest from full or associates members of RDI, interested in being part of the following Working Groups:

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.

As one of the main deliverable of the Working Group will be to encourage more patient engagement in the Rare Disease Research Consortium (IRDiRC), the Council would like to take this opportunity to ask interested applicants to mention if they would be interested in representing RDI in the IRDiRC, in addition to being a member of the Working Group.

The following documents can be downloaded to apply for membership:

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 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