With critical support from CRN, Drs. Foxe, Molholm, and Francisco from the Cognitive Neurophysiology Laboratory (CNL) in New York...
Read moreBy Cystinosis Research Network
May 8, 2020
Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...
Read moreBy Cystinosis Research Network
May 7, 2020
Procysbi is now available for U.S. patients with cystinosis in microbead packets. You can find more information along with...
Read moreBy Cystinosis Research Network
April 28, 2020
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