The CRN 2021 Family Conference will be hosted in Nashville, Tennessee (U.S). Please visit our events page for details...
read moreOn April 25th, a free online conference is being provided by Cystinosis Network Europe (CNE) and Cystinosis Ireland. The...
read moreHow is the COVID-19 pandemic impacting our cystinosis community? A survey was created to help answer this question. The...
read moreA letter from Fernanda Copeland, Executive Director, Head Patient Advocacy & Engagement at AVROBIO March 24, 2020 We hope...
read moreTreatment announcement: Horizon has made tear-open granules packets available. Details available at http://bit.ly/37zXmY
read moreHow will you honor the “rarest” day of the year? Check out our cystinosis awareness giveaway. Sign up and...
read moreWhen it comes to Elle and cystinosis, “We continue to take each day dose by dose.” Hear more from...
read moreI do not have one story or just one person I can point out as a #GreatGiver. I am...
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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