I first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...
Read moreBy Cystinosis Research Network
November 30, 2019
Life with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...
Read moreBy Cystinosis Research Network
November 30, 2019
They say sometimes it takes a village to help raise children, for us that village included two beautiful women....
Read moreBy Cystinosis Research Network
November 30, 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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