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RareConnect.org, a EURORDIS initiative, is the growing online network of rare disease communities that brings together thousands of patients, families and groups who might otherwise be isolated. Through RareConnect, patients and those who care for them can communicate, sharing experiences and information in a safe, moderated online forum. With human translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian, Portuguese or Spanish languages.

Each of the rare disease-specific communities is supported by the full-time community managers who animate and promote the communities and support volunteer moderators from the member group. If a community has not yet been created for a specific rare disease, the discussion groups provide a platform to ask questions and participate in discussions about more transversal issues related to living with a rare disease. It is an invaluable tool for sharing experiences and solutions to common problems based on the experiences of the wider rare disease community.

More information

  • Visit the RareConnect website for a full list of the current rare disease communities.
  • Patients or patient organisations interested in partnering with EURORDIS to develop an online community for their rare disease, can contact: marta.campabadal@eurordis.org



Page created: 23/07/2013
Page last updated: 24/04/2017
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