RareConnect.org online communities


RareConnect.org, together with the world's leading rare disease patient groups, offers global online communities allowing people to connect around issues which affect them while living with a rare disease.

RareConnect Story of the Week

RareConnect continues to grow! Be sure to check out the 2 new online communities for Carnitine palmitoyl transferase II deficiency, myopathic form and Peutz-Jeghers syndrome.

To find out more about how you can join RareConnect, contact us.




Job Openings


EURORDIS is currently hiring for the following position:

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