By Jonathan Dicks, CRN President and VP Development I recently had the privilege of attending the three-night Raregivers Men’s...
Read moreBy Cystinosis Research Network
June 18, 2023
Join us on the Raising Rare podcast featuring a young adult and caregiver living with cystinosis. The podcast episode...
Read moreBy Cystinosis Research Network
May 8, 2023
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
The 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...
Read moreA new chapter in cystinosis research has begun. Novartis has officially opened the next phase of its CYStem Phase...
Read moreFor our families using Cystadrops, we received the following information from Recordati. This update was in response to direct...
Read moreNovartis has announced the Phase I/II CYStem clinical trial will recruit children ages 2-5 with nephropathic cystinosis. The trial...
Read moreThe CRN-funded QUALIFY-US study, also known as the Quality of Life study, is wrapping up this month. Our researchers...
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