Saturday, February 23, 2019 from 10:00 am – 4:00 pm We created this event to help raise money for cystinosis because this disease is something very near and dear to my heart. I have been living with this disease since I was 4-years-old. One day I was talking to my friend and trainer, JD, the […]

February 28, 2019 Worldwide Here's a fun way to "Share Your Rare" this Rare Disease Day - sign up for a free cystinosis ribbon temporary tattoo. Spread cystinosis awareness on Rare Disease Day, Cystinosis Awareness Day and all year long! We've transformed the cystinosis awareness ribbon into a temporary tattoo. Now you can “wear your […]

The PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide. The Patient Congress is focused on incorporating the patient voice across the entire product lifecycle. Through three tailored tracks, examine the pieces integral to the patient journey of both […]