Making lives better starts here.

The Cystinosis Research Network's vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with Cystinosis.

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The Cystinosis Research Network's vision is the discovery of improved treatments and ultimately a cure for cystinosis.

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Family Support.

The Cystinosis Research Network offers a variety of Family Support services such as an article library, support groups, and family conferences.

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Education and Awareness.

The Cystinosis Research Network educates the public and professional community about cystinosis, is actively involved in the rare disease community, and offers educational scholarships to individuals with cystinosis and their siblings.

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Dedicated to a cure. Committed to our community.


2017 CRN Family Conference

Mystery Diagnosis: Cystinosis

The Balancing Act on Lifetime

Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to accumulate in various organs of the body. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine. The availability of cysteamine medical therapy has dramatically improved the natural history of cystinosis, so that well-treated cystinosis patients can live into adulthood.

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Latest News

EEG Study March 25, 2017
US families: Take part in a CRN-funded study on how the brain processes and integrates sensory information in children diagnosed with Cystinosis…Learn more…
2017 Call for Proposals March 24, 2017
Researchers interested in improving treatments for Cystinosis: call for proposals is open for submission until June 1, 2017. Get info on grant guidelines and funding priorities...Learn more…
Grants Awarded March 15, 2017
Year two study grants provided by the CRN for Cystinosis research focusing on...Learn more...

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