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.
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: firstname.lastname@example.org