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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 & ResourcesAngel Aid is currently providing free trauma-less needle poke wellness kits for the cystinosis community. Their “Buzzy” kits were designed...
Learn MoreOn March 8, 2021, the Cystinosis Research Network announced Tim Wyman as the new interim President. The position was previously...
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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