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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.
Learn More About UsIn honor of our cystinosis warriors who have passed, the Cystinosis Memorial Fund can support tutoring, provide career resources and more. Apply today!
Learn MoreThe CRN provides the latest updates on research and treatment advancements, funds research grants and provides best clinical practices resources.
See Support & ResourcesPlease click here for the latest updates from Leadiant on the Cystadrops shortage. If you...
Learn MoreInterim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.
Learn MoreDaily life with cystinosis can present challenges. There are resources to help you along the way.
Learn MoreTeams 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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