Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.
Read moreBy Cystinosis Research Network
May 12, 2021
The CRN 2021 Family Conference is July 16 – July 18. In response to the COVID-19 pandemic, we’ve decided...
Read moreBy Cystinosis Research Network
May 12, 2021
In the late 1970’s, a hospitalization led to a cystinosis diagnosis which was uncommon at the time. Karen, and...
Read moreBy Cystinosis Research Network
May 7, 2021
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...
Read more