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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2021 Summer Conference

Join our fully virtual family conference July 16-18, 2021. “The Beat Goes On” with access to renowned physicians and experienced cystinosis patients and caregivers. Sign up for free 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

Going Virtual: CRN Family Conference Kickoff

Today (July 16) the first-ever, 100% online CRN Family Conference begins. Registration...

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New

May 2021 Cystaran Update

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

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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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