The Support Groups are an easy way to communicate with the cystinosis community using Yahoo Groups. Yahoo Groups are a way of communicating by email to many people that belong to the same group. CRNSupportGroup and Cystinosisteensupport are the two cystinosis Yahoo Groups affiliated with the Cystinosis Research Network.
For parents, affected adults, caregivers, family, and friends. We also welcome researchers and medical professionals who are interested in cystinosis. This is the place to discuss the various aspects of cystinosis, and how it affects our lives, how we cope with it, vent our frustrations, share our fears, our hopes, and dreams.
For teens with cystinosis and teenage siblings of children and adults with cystinosis. Connect with other teenagers who are dealing with similar issues. The posts include questions, concerns, ideas and supportive sharing.
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