Treatment announcement: Horizon has made tear-open granules packets available. Details available at http://bit.ly/37zXmY
read moreWelcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...
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 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...
read moreLife with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...
read moreThey say sometimes it takes a village to help raise children, for us that village included two beautiful women....
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