Welcome to theCystinosis Research Network

Cystinosis is a rare, genetic, metabolic, lysosomal storage disease that causes an abnormal accumulation of the amino acid cystine in various organs and tissues of the body such as the kidneys, eyes, muscles, pancreas and brain.

The cystine accumulation causes widespread tissue and organ damage. Cystine accumulation can lead to kidney failure, muscle wasting, swallowing difficulty, diabetes, hypothyroidism, cerebral atrophy, photophobia, blindness, corneal ulceration, ventilatory impairment, and more. Without treatment, children with cystinosis will usually develop end stage kidney failure and die prematurely.

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For Teens & Adults

In honor of our cystinosis warriors who have passed, the Cystinosis Memorial Fund can support tutoring, provide career resources and more. Apply today!

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Health Care Professionals

The CRN provides the latest updates on research and treatment advancements, funds research grants and provides best clinical practices resources.

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News

New

May 2021 Cystaran Update

Please click here for the latest updates from Leadiant on the Cystadrops shortage. If you...

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New

An Open Letter to the Cystinosis Community

Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.

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Resources

Newly Diagnosed

You’ve received a diagnosis. Now what?

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Education

Daily life with cystinosis can present challenges. There are resources to help you along the way.

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Research Developments

Teams of medical experts are researching every aspect of cystinosis with the purpose of understanding our disease, finding improved treatments and a cure.

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