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.


2019 Family Conference

Adult Leadership Application

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

Canada Receives Eye Drop ApprovalMarch 13, 2019
Canada approved the first cysteamine eye drops solution to help people living with cystinosis.Read more...
Cystinosis Awareness GiveawayFebruary 1, 2019
"Wear Your Rare" with our new temporary tattoos. Request your free body art today!Read more...
Stand up to CystinosisFebruary 23, 2019
Turning passion into a friendly competition to raise funds for his disease, this adult living with cystinosis...Read more...

Resources/Support Groups/Popular Articles