rare disease

AVROBIO: Cystinosis Gene Therapy Update Functional & Clinical Improvements Reported

November 17, 2020 – AVROBIO announced that data suggests functional and clinical improvements for the first cystinosis patient at...

Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on...

In April, the Cystinosis Network Europe adapted their international conference to the restrictions set forth by COVID-19. The result...

Beginning September 15, 2020, Recordati Rare Diseases announced the availability of CYSTADROPS across the United States. CYSTADROPS are a...

Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University...

Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed...

Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of...

We are going virtual! The CRN is introducing a series of virtual meetups taking place this fall. Available to...

The Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership...

In the third episode of “Cystinosis Sessions,” a live video conference series created by adults living with cystinosis, topics...