experience

AVROBIO Cystinosis Focus Group

AVROBIO is looking for perspectives from the cystinosis community. They will be conducting a small focus group to help...

CRN at 2021 Virtual PAS

The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered...

Cystinosis Sessions: April Video Call

Cystinosis Sessions: April Video Call All are invited to join as the Adult Leadership Advisory Board hosts a live...

Cystinosis Sessions: March Video Call

All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March...

Cystinosis Sessions: January Video Call

All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session...

Podcast: Youth to Adult Transition (part 2)

Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth...

Advocating For Our Daughter’s Rare Disease

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

Cystinosis Awareness Day – 3rd Annual

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...

Cystinosis Sessions: Coronavirus, Medication

Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm...

Podcast: Staying Positive while living with Cystinosis

Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...

Tag: experience