All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March...
read moreAll are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session...
read moreYouth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth...
read moreAdvocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...
read moreCystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...
read moreJoin the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm...
read moreWelcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...
read moreWhat started as a cystinosis awareness effort turns into a life-changing encounter. It all started with Jana (my twin...
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