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Cystinosis Warrior Impact Program

In honor of 5th Annual Cystinosis Awareness Day a new global initiative has been announced: the Cystinosis Warrior Impact...

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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...

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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...

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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....

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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...

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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...

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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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2021 CRN Summer Online Conference

Mark your calendars for the 2021 CRN Family Conference!

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An Open Letter to the Cystinosis Community

Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.

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Miles for Moose 5.7 Mile Virtual Walk/Run

Support the first annual Miles for Moose fundraiser.

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