Hello! My name is Gracie, I’m 21 years old, and I have a rare disease called cystinosis. Cystinosis is...
Read moreBy Cystinosis Research Network
April 27, 2023
In recognition of Rare Disease Day 2023, the Adult Leadership Advisory Board compiled thoughts from a few cystinosis warriors....
Read moreBy Cystinosis Research Network
February 27, 2023
By Julie Ayres, mom to Sierra Sierra is approaching a rather yucky milestone—one year on peritoneal kidney dialysis. We...
Read moreBy Cystinosis Research Network
February 14, 2023
A newly approved eye drop solution will expand treatment options for people living with cystinosis in Canada. Targeting corneal...
Read moreThe Cystinosis Research Network (CRN) is pleased to welcome two newly appointed leaders whose professional expertise, lived experience, and...
Read moreNews from Leadiant regarding new storage of Cystaran (cysteamine ophthalmic solution) 0.44%. Beginning December 22, 2025, shipments of Cystaran...
Read moreThe next phase of clinical development for the CF10 prodrug to treat cystinosis has been announced. The Cystinosis Foundation...
Read moreThe Neuromuscular Clinic at Massachusetts General Hospital (MGH) led by Dr. Reza Seyedsadjadi, is currently enrolling participants for a...
Read moreEmory University in Atlanta, Georgia, is actively recruiting for the Cohort 0 control groupin the CYStem clinical trial. While...
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