RareConnect

RareConnect was created by EURORDIS (European Rare Disease Organisation) to provide a safe online space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

The website features hundreds of online communities, each dedicated to a specific rare condition (including undiagnosed diseases and syndromes without names). Each community on RareConnect is moderated by a person living with a relevant rare disease and linked to a trusted patient group. Furthermore all moderators are trained in the use of their online communities charter and supported on a daily basis by a team of community managers.