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.



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