Support Groups

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.

crn groups

Cystinosis Support List

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.

Cystinosis Teen Support List

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.


If you would like to subscribe to either of these lists please fill out the form below. We require you give your name and address to avoid subscribing salespeople and other undesirables to the lists. Your information is kept confidential.

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  1. Stay up-to-date with the latest information from the Cystinosis Research Network by joining our email list.

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