cystinosis

Podcast: Youth to Adult Transition (part 1)

Youth to Adult Transition Part 1- Discussion with Medical Professionals The third podcast from the ALAB will focus on...

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

The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression,...

AVROBIO announces the second patient with cystinosis has been dosed in the company’s AVR-RD-04 investigational gene therapy Phase 1/2...

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...

With critical support from CRN, Drs. Foxe, Molholm, and Francisco from the Cognitive Neurophysiology Laboratory (CNL) in New York...

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

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