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Cystinosis Awareness Day

On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in...

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Advocating For Our Daughter’s Rare Disease

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

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Inspirational Stories

Our community is small but mighty! Hear about our triumphs.

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