Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....
read moreThe organization of the 3rd Cystinosis Network Europe (CNE) International Cystinosis Conference would like to offer all interested parties...
read moreThis past winter we lost a revolutionary in the cystinosis world, Dr. Jerry Schneider. During his time at the...
read moreA global initiative has been announced: the Cystinosis Warrior Impact Program. Our goal is to support, help or find...
read moreClinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...
read moreCould newborn screening provide a turning point in the natural history of cystinosis? Review the latest publication “Newborn Screening: Review of...
read moreData from the AVROBIO Phase 1/2 investigational gene therapy for cystinosis was released today at WORLDSymposium in San Diego....
read moreVaincre les Maladies Lysosomales has announced funding for a new research project benefitting the cystinosis community: Characterization of Respiratory...
read moreCystinosis researcher, Ana Francisco and her team at Montefiore Medical Center/Einstein College of Medicine are exploring disease impact on...
read moreAVROBIO is looking for perspectives from the cystinosis community. They will be conducting a small focus group to help...
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