RareConnect is a platform designed to connect rare disease patients, families, researchers, and organizations to online communities and conversations. There are currently over 31, 000 members and over 150 disease – specific communities, including a community for individuals without a diagnosis. The communities provide patients with a supportive and safe environment to ask questions, share experience, and interact with others with a similar condition.
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 enrollment to research ethics board approved studies. For clinicians and researchers this is a new tool to maximize surveys and data collection.
Sign Up and Join a Community Here: rareconnect.org