The long awaited Cystinosis Advocate Newsletter is here. Choose from research updates, advocacy efforts, family stories, events, cystinosis support...
Read moreBy Cystinosis Research Network
November 6, 2023
In May 2023, Novartis acquired the investigational autologous hematopoietic stem cell (HSC) gene therapy program for the treatment of...
Read moreBy Cystinosis Research Network
October 27, 2023
Celebrate Halloween from home this year. ALAB invites you to a free, online event that will test your spooky...
Read moreBy Cystinosis Research Network
October 9, 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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