Inspirational Stories

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Living with cystinosis can sometimes feel like living on a deserted island. With the help of in-person eventsonline groups and stories like these, we hope everyone is inspired to keep up the fight. We are all in this together!

Time for Transplant: Kidneys from Strangers

10-year-old Girl Shares Life with a Rare Disease on Capitol Hill

Cystinosis Awareness Day

That there was a stranger that was willing to put his life on hold

"and donate part of his body to somebody he has never even met is just so amazing..."

-Heidi, living with cystinosis.