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read moreProcysbi is now available for U.S. patients with cystinosis in microbead packets. You can find more information along with...
read moreThe CRN 2021 Family Conference will be hosted in Nashville, Tennessee (U.S). Please visit our events page for details...
read moreFollowing much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference...
read moreWelcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...
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...
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