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Tag: rare disease

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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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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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ALAB Podcast Release: Coping Mechanisms

The Adult Leadership Advisory Board (ALAB) continues their podcast series “Cystinosis Rare: Journey Into the Unknown” with episode 8...

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Cystinosis Case Competition

AdvoSci Health hosted a Cystinosis Case Competition this fall semester. Students were tasked with learning foundational information about cystinosis...

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How A Rare Diagnosis Impacts A Family

The Dicks Family sat down for a candid conversation with Daniel Levine from Global Genes. During the latest podcast,...

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Over $40k in Cystinosis Scholarships Awarded

This summer we reached a milestone – over $40,000 in scholarships awarded since our program’s inception. Congratulations to the...

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May 2021 Cystaran Update

Please click here for the latest updates from Leadiant on the Cystadrops shortage. If you have further questions, please...

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