Author: cystinosisrn

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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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*NEWS* Leadiant Announces Cystaran Approval

Leadiant Biosciences, Inc. received communication from the FDA that they have approved the new Cystaran bottle and manufacturer. Please...

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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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Research Update: Cystinosis & The Brain

A high-level research update from Ana Francisco, Sophie Molholm, PhD Co-Principal Investigator, John Foxe, PhD Co- Principal Investigator on...

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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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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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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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