The Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...
read moreA global initiative has been announced: the Cystinosis Warrior Impact Program. Our goal is to support, help or find...
read moreOn May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...
read moreGail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail...
read moreDiet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our...
read moreFebruary 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...
read moreJoin The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and...
read moreThe Dicks Family sat down for a candid conversation with Daniel Levine from Global Genes. During the latest podcast,...
read moreThis summer we reached a milestone – over $40,000 in scholarships awarded since our program’s inception. Congratulations to the...
read moreSaturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS The...
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