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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...

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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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New Slate Announced: CRN Board

The Cystinosis Research Network has announced new board member updates. At the last Board Meeting, the nominating committee proposed...

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Going Virtual: CRN Family Conference Kickoff

Today (July 16) the first-ever, 100% online CRN Family Conference begins. Registration is still open so we invite you...

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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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An Open Letter to the Cystinosis Community

Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.

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2021 Summer Conference Announcement

The CRN 2021 Family Conference is July 16 – July 18. In response to the COVID-19 pandemic, we’ve decided...

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Cystinosis Awareness Day – Discovering a New Type of the Disease

In the late 1970’s, a hospitalization led to a cystinosis diagnosis which was uncommon at the time. Karen, and...

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Cystinosis Awareness Day – A Message from Leadiant Biosciences

In honor of Cystinosis Awareness Day – May 7 – Leadiant Biosciences is commemorating this event with a letter...

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For Cystinosis Families: Free Needle Poke Wellness Kits

Angel Aid is currently providing free trauma-less needle poke wellness kits for the cystinosis community. Their “Buzzy” kits were...

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