Youth to Adult Transition Part 1- Discussion with Medical Professionals The third podcast from the ALAB will focus on...
read moreThe Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership...
read moreThe forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression,...
read moreAVROBIO announces the second patient with cystinosis has been dosed in the company’s AVR-RD-04 investigational gene therapy Phase 1/2...
read moreThe third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults...
read moreIn the third episode of “Cystinosis Sessions,” a live video conference series created by adults living with cystinosis, topics...
read moreThe Rare Diseases Clinical Research Network (RDCRN) is hoping to learn how the COVID-19 pandemic impacts people who live...
read moreWith critical support from CRN, Drs. Foxe, Molholm, and Francisco from the Cognitive Neurophysiology Laboratory (CNL) in New York...
read moreAdvocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...
read moreCystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...
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