research

Recruiting for Health-Related Quality of Life Study

Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....

CNE Conference Recordings

The organization of the 3rd Cystinosis Network Europe (CNE) International Cystinosis Conference would like to offer all interested parties...

In Memoriam: Dr. Jerry Schneider

This past winter we lost a revolutionary in the cystinosis world, Dr. Jerry Schneider. During his time at the...

Cystinosis Warrior Impact Program

A global initiative has been announced: the Cystinosis Warrior Impact Program. Our goal is to support, help or find...

Study Participants Needed: The Effect of Exercise on Muscle Dysfunction in Cystinosis

Clinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...

Newborn Screening: Review of its Impact for Cystinosis

Could newborn screening provide a turning point in the natural history of cystinosis? Review the latest publication “Newborn Screening: Review of...

Research Update: Investigational Gene Therapy for Cystinosis

Data from the AVROBIO Phase 1/2 investigational gene therapy for cystinosis was released today at WORLDSymposium in San Diego....

New Pulmonary Research Funded by Vaincre les Maladies Lysosomales

Vaincre les Maladies Lysosomales has announced funding for a new research project benefitting the cystinosis community: Characterization of Respiratory...

Participants Requested: Cystinosis & the Brain Study

Cystinosis researcher, Ana Francisco and her team at Montefiore Medical Center/Einstein College of Medicine are exploring disease impact on...

AVROBIO Cystinosis Focus Group

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

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