Author: cystinosisrn

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CRN Welcomes New Board Members

The Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...

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Cystinosis Mexico Hosts 2nd Medical Training

San Miguel de Allende, Mexico was the setting for Cystinosis Mexico’s training course August 26 – 28. Nephrologists, ophthalmologists...

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CNE Conference Recordings

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

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In Memoriam: Dr. Jerry Schneider

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

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AVROBIO Reports Positive Data From Phase 1/2 Clinical Trial of Investigational Gene Therapy for Cystinosis, Including New Interim Data on Neurocognitive Measures

Press release originally published May 17, 2022 on Avrobio.com. New early data show key visual motor integration, visual perception...

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Cystinosis Warrior Impact Program

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

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Q & A on Cystaran Eye Drops

Leadiant, the makers of Cystaran eye drops, are opening up the floor for a Town Hall Q&A on Wednesday,...

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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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CYSTARAN Eye Drops Back In Stock

On Wednesday, April 13, Leadiant Biosciences confirmed CYSTARAN eye drops are available for those who qualify. Along with a...

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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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