In order to think of what Cystinosis Awareness Day means to me I had to think about what cystinosis...
Read moreBy Cystinosis Research Network
May 7, 2019
A white blood cell (WBC) test helps monitor cystine levels important in managing cystinosis. Information about the test and...
Read moreBy Cystinosis Research Network
April 5, 2019
Health Canada approved the first cysteamine eye drop solution to help people living with cystinosis. Read more…
Read moreBy Cystinosis Research Network
March 13, 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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