November 17, 2020 – AVROBIO announced that data suggests functional and clinical improvements for the first cystinosis patient at...
Read moreBy Cystinosis Research Network
November 19, 2020
As of today, November 12th, AllianceRx Walgreens Prime is unable to fulfill any orders of CYSTARAN. Leadiant’s full announcement...
Read moreBy Cystinosis Research Network
November 13, 2020
Recordati Rare Diseases Inc., the makers of CYSTADROPS, launched a website to support the launch of the eye treatment...
Read moreBy Cystinosis Research Network
October 13, 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