The Rare Diseases Clinical Research Network (RDCRN) is hoping to learn how the COVID-19 pandemic impacts people who live...
read moreAdvocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...
read moreThe person I’m most grateful for is my sister Jennifer. Six and a half years ago my labs were...
read moreI first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...
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