Cystinosis

Self Help Clearinghouse

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Cystinosis Research Network

Online. Founded 1996. Dedicated to supporting and advocating for continued research, providing family support and education programs. Professionals and caregivers are welcome to join. Promotes and supports research that will lead to a better understanding, improved treatments and a cure for cystinosis. Dedicated to improving awareness and education of cystinosis to be utilized as a resource for families and public. Programs include support group, networking, toll-free number, website, newsletter and family conferences. Website to improve awareness and education of cystinosis for patients, families and physicians. Non-moderated but members must be pre-approved.
Website: http://www.cystinosis.org
Verified: 2/14/2013

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