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February 2022

Rare Disease Day 2022

February 28

February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the global event campaigns for equity for the over 7,000 rare diseases currently identified. Among those rare diseases is cystinosis. Cystinosis is a genetic, lysosomal storage disorder where unusual cystine accumulation occurs in every cell in the body. The cystine buildup causes tissue and organ failure, leading to kidney failure, muscle wasting, swallowing difficulty, diabetes, photophobia, and more. Our cystinosis community is…

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