rare disease

Free Spanish Translation Services

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...

Data from the AVROBIO Phase 1/2 investigational gene therapy for cystinosis was released today at WORLDSymposium in San Diego....

The Adult Leadership Advisory Board (ALAB) continues their podcast series “Cystinosis Rare: Journey Into the Unknown” with episode 8...

February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...