How patient groups can get involved

Patient groups are at the heart of EURORDIS and the work that we do. It is thanks to you that we are able to be the voice of the 30 million Europeans living with a rare disease. If you are a member of, or an advocate for, a patient organisation, here are some ways you can get involved!


Take action

Find out how patient groups can get involved in EURORDIS activities.


Connect with others

See below for how you can connect with others in the rare disease community.

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.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