My daughter, Deanna Lynn, was diagnosed with cystinosis 46 years ago in Houston, TX. At that time I did...
Read moreBy Cystinosis Research Network
November 28, 2019
The great givers in my life are my family. I was born with a rare kidney disease known within...
Read moreBy Cystinosis Research Network
November 27, 2019
What started as a cystinosis awareness effort turns into a life-changing encounter. It all started with Jana (my twin...
Read moreBy Cystinosis Research Network
November 27, 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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