experience

Cystinosis Sessions: March Video Call

All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March...

All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session...

Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth...

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...

Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm...

Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...

What started as a cystinosis awareness effort turns into a life-changing encounter. It all started with Jana (my twin...