rare disease

Cystinosis + Raising Rare Podcast

Join us on the Raising Rare podcast featuring a young adult and caregiver living with cystinosis. The podcast episode...

Hello! My name is Gracie, I’m 21 years old, and I have a rare disease called cystinosis. Cystinosis is...

In recognition of Rare Disease Day 2023, the Adult Leadership Advisory Board compiled thoughts from a few cystinosis warriors....

In partnership with Bromberg and Associates, cystinosis families now have access to free English/Spanish translation services. This includes, but...

The Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...

On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in...

San Miguel de Allende, Mexico was the setting for Cystinosis Mexico’s training course August 26 – 28. Nephrologists, ophthalmologists...

The organization of the 3rd Cystinosis Network Europe (CNE) International Cystinosis Conference would like to offer all interested parties...

This past winter we lost a revolutionary in the cystinosis world, Dr. Jerry Schneider. During his time at the...

Press release originally published May 17, 2022 on Avrobio.com. New early data show key visual motor integration, visual perception...