Tag: connect

Search
Generic filters
Exact matches only

Cystinosis Sessions: Diet & Nutrition

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

read more

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...

read more

Cystinosis & Mental Health: Virtual Meetup

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

read more

Cystinosis Basics: Virtual Meetups

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

read more

Caregivers Connect: Virtual Meetup

Caregivers of children with cystinosis under 18 years old are invited. Join us for a video conference to connect...

read more

Open Registration – 2020 Cystinosis Virtual Meetups

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

read more

Cystinosis Sessions: Overcoming Limitations & Goal Setting

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

read more

2021 Family Conference Location

The CRN 2021 Family Conference will be hosted in Nashville, Tennessee (U.S). Please visit our events page for details...

read more

Ringing in the Future: 2019 Conference Highlights

People from around the world joined the CRN Family Conference this summer to help “Ring in the Future”. Here...

read more

Global Genes: Rare Patient Advocacy Summit

On behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the...

read more