A global initiative has been announced: the Cystinosis Warrior Impact Program. Our goal is to support, help or find...
Read moreBy Cystinosis Research Network
April 29, 2022
Leadiant, the makers of Cystaran eye drops, are opening up the floor for a Town Hall Q&A on Wednesday,...
Read moreBy Cystinosis Research Network
April 20, 2022
Clinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...
Read moreBy Cystinosis Research Network
April 14, 2022
Join us on the Raising Rare podcast featuring a young adult and caregiver living with cystinosis. The podcast episode...
Read moreHello! My name is Gracie, I’m 21 years old, and I have a rare disease called cystinosis. Cystinosis is...
Read moreIn recognition of Rare Disease Day 2023, the Adult Leadership Advisory Board compiled thoughts from a few cystinosis warriors....
Read moreBy Julie Ayres, mom to Sierra Sierra is approaching a rather yucky milestone—one year on peritoneal kidney dialysis. We...
Read moreDr. Gahl is the Director of the Undiagnosed Diseases Program, a Senior Investigator in the Medical Genetics Branch and...
Read moreIn partnership with Bromberg and Associates, cystinosis families now have access to free English/Spanish translation services. This includes, but...
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