Cystinosis Research Network offers three different listserves for communicating with the cystinosis community.
The Cystinosis Support Group is a group
for parents, affected adults, and their 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 our dreams.
Direct
Link to the CRN Support Group - Click Here
(For current members only. New
members please click the link below.)
Click to join the CRNSupportGroup
The Cystinosis Teen Support list is 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. We keep your information confidential.
If this form does not work for you, please email your information to info@cystinosis.org
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