Author: cystinosisrn

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Pet Fundraiser Benefitting Adults with Cystinosis

The Adult Leadership Advisory Board (ALAB) created custom designed bandanas for your furry friends. Your donation provides support for...

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2023 Family Conference Theme Revealed

After four years without an in person meeting, we invite you to strap on your boots for a trip...

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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)....

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Seeking Volunteers for Male Fertility in Cystinosis Study

Men 18+ living with nephropathic cystinosis are currently being recruited for a research study, Clinical and Molecular Assessments of...

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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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