How is the COVID-19 pandemic impacting our cystinosis community? A survey was created to help answer this question. The...
Read moreBy Cystinosis Research Network
March 24, 2020
A letter from Fernanda Copeland, Executive Director, Head Patient Advocacy & Engagement at AVROBIO March 24, 2020 We hope...
Read moreBy Cystinosis Research Network
March 24, 2020
Treatment announcement: Horizon has made tear-open granules packets available. Details available at http://bit.ly/37zXmY
Read moreBy Cystinosis Research Network
February 18, 2020
The next phase of clinical development for the CF10 prodrug to treat cystinosis has been announced. The Cystinosis Foundation...
Read moreThe 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...
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