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

CRN Accepting 2017 Scholarship Applications February 10, 2017
Individuals living with Cystinosis AND their siblings have a chance to receive funds towards a college/vocational program. Here’s how to apply...Learn more…
Researchers: Seedcorn Funding Program February 9, 2017
Funding available this summer for researchers interested in studying Cystinosis...Learn more…
Make Your Mark this Rare Disease Day February 3, 2017
Grab your FREE “I am #CystinosisAware” sticker packet and help raise awareness and education for Cystinosis. Learn more…

Resources/Support Groups/Popular Articles