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...

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...

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...

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

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

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...

The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults...