rare disease

Cystinosis Gene Therapy & Research Updates: Virtual Meetup

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...

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

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

The Rare Diseases Clinical Research Network (RDCRN) is hoping to learn how the COVID-19 pandemic impacts people who live...

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

Join the LIVE video conference session on May 2nd!