About us

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

The RareConnect project uses volunteer moderators from patient groups to ensure quality information is exchanged on the forum and a safe, supportive environment is created for all members to feel comfortable when communicating. Moderators are drawn from expert patients nominated by the participating patient groups and are supported by full-time Online Patient Community Managers at EURORDIS.

Are you interested in creating a community on RareConnect? Email us at team@rareconnect.org.
To launch a community in RareConnect we often work with patient groups from different countries. We also follow these steps.


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One thought on “About us

  1. Hi!! I have seen several facebook pages dedicated to individual rare diseases created especifically for Feb. 28th International Rare Disease Day but I have not found one dedicated to rare neurological diseases like Arnold Chiari Malformation and Syringomyelia. Can you tell me if there is one for them and or if the organizations doing research to find a cure, offer support, and educating others about these conditions have their pages to include this logo like http://www.conquerchiari.org, http://www.asap.org and http://www.csf.com? Thanks

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