Tag: Cystinosis Awareness Day

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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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Cystinosis Awareness Day – 3rd Annual

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...

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57 Miles for Cystinosis

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Cystinosis: A Blessing and a Burden

In order to think of what Cystinosis Awareness Day means to me I had to think about what cystinosis...

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