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 moreIn partnership with Bromberg and Associates, cystinosis families now have access to free English/Spanish translation services. This includes, but...
read moreThe Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...
read moreOn May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in...
read moreSan Miguel de Allende, Mexico was the setting for Cystinosis Mexico’s training course August 26 – 28. Nephrologists, ophthalmologists...
read moreThe organization of the 3rd Cystinosis Network Europe (CNE) International Cystinosis Conference would like to offer all interested parties...
read moreThis past winter we lost a revolutionary in the cystinosis world, Dr. Jerry Schneider. During his time at the...
read morePress release originally published May 17, 2022 on Avrobio.com. New early data show key visual motor integration, visual perception...
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