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 CRN Family Conference

Fall Patient Meetups

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

Eternal Support: Father Gets Tattoos of Son's Cystinosis Scars December 12, 2018
"My hope was to show my son that he is not in this alone. I’ve got him. I always will..." Read more…
2018 Scholarships Awarded October 19, 2018
This year, scholarships were provided to four deserving students. Read more...
CRN SRB Chairperson elected into National Academy of Medicine October 15, 2018
Dr. William Gahl's work at the NIH has led to this distinguished honor. Read more…

Resources/Support Groups/Popular Articles