cystinosisrn

ALAB Podcast Release: Coping Mechanisms

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

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...

Cystinosis Case Competition

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

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...

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...

AVROBIO Cystinosis Focus Group

AVROBIO is looking for perspectives from the cystinosis community. They will be conducting a small focus group to help...

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,...

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...

FDA Authorizes Additional COVID-19 Vaccine Dose for Certain Immunocompromised Individuals

Members of the CRN’s Scientific Review Board have compiled articles for those interested in learning more about an additional...

AVROBIO reports: U.S. Food and Drug Administration granted Fast Track Designation to AVR-RD-04 for cystinosis

In a quarterly update, AVROBIO announced: “Data from the patients dosed to date across three indications continue to...

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