February 28, 2018 Gear up for Rare Disease Day and request your FREE cystinosis ribbon temporary tattoo and start...
Read moreBy Cystinosis Research Network
February 13, 2019
The Cystinosis Ireland Seedcorn Funding scheme aims to provide researchers with the opportunity to generate solid preliminary data which...
Read moreBy Cystinosis Research Network
January 30, 2019
Support Bill Brink, an adult living with cystinosis, as he hosts “Stand Up to Cystinosis” a friendly weight lifting...
Read moreBy Cystinosis Research Network
January 29, 2019
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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