RareConnect

RareConnect.org, maintained by Care4Rare Canada in partnership with EURORDIS, 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 translation available at no cost to participants, RareConnect allows patients from different countries to interact in English, French, German, Italian, Portuguese, Spanish, Russian, Serbo-Croatian, Czech, Ukranian and Japanese.

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. It is an invaluable tool for sharing experiences and solutions to common problems based on the experiences of the wider rare disease community.

RareConnect plans to expand the social platform and integrate a research component for the benefit of researchers and RareConnect users. RareConnect will allow users to anonymously connect to a secure research portal, enabling enrolment to research ethics board approved studies. For clinicians and researchers this is a new tool to maximize surveys and data collection