living with cystinosis

ISO a Hero on National Donor Day

By Julie Ayres, mom to Sierra Sierra is approaching a rather yucky milestone—one year on peritoneal kidney dialysis. We...

The Adult Leadership Advisory Board (ALAB) continues their podcast series “Cystinosis Rare: Journey Into the Unknown” with episode 8...

This summer we reached a milestone – over $40,000 in scholarships awarded since our program’s inception. Congratulations to the...

Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed...

The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults...

Join the LIVE video conference session on May 2nd!