After four years without an in person meeting, we invite you to strap on your boots for a trip...
read moreFebruary 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...
read moreThis summer, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven, Belgium. The conference will...
read moreThe Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network...
read moreCaregivers of children with cystinosis under 18 years old are invited. Join us for a video conference to connect...
read moreOn April 25th, a free online conference is being provided by Cystinosis Network Europe (CNE) and Cystinosis Ireland. The...
read moreThe person I’m most grateful for is my sister Jennifer. Six and a half years ago my labs were...
read moreCystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...
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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