Turn knowledge into new memories.

Discover what’s possible with the right information—and a little empowerment.

Learn how you and your loved ones can live with cystinosis.

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Turn knowledge into new friendships.

Discover what’s possible with the right information—and a little empowerment.

Learn how strong relationships can help you live with cystinosis.

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Turn knowledge into new triumphs.

Discover what’s possible with the right information—and a little empowerment.

Learn how to manage the challenges of cystinosis during any phase of life.

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Understanding cystinosis

Cystinosis is a rare, genetic metabolic condition that affects every cell in a patient’s body. If left untreated, cystinosis can cause irreversible damage to tissue and organs. But ongoing treatment now makes it possible for people to manage cystinosis.

Learn more about cystinosis »

Community and events

You’re not alone in your journey through life with cystinosis. Learn more about the community of people living with cystinosis, and see if there are any cystinosis events coming to your area!