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

CRN YouTube Channel

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

Advocate At Any Age April 3, 2018
Just 10-years-old, Josie has lobbied on Capitol Hill on behalf of treatment for rare diseases. Read about her latest interview. Learn more... Learn more...
Cystinosis Awareness Day March 28, 2018
The first annual Cystinosis Awareness Day is May 7th, 2018. Learn More…
Rare Disease Day 2018 February 1, 2018
Be a part of the cystinosis community's Rare Disease Day efforts. Get started here…

Resources/Support Groups/Popular Articles