Tag: cystinosis

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Cystinosis Sessions: September Video Call

Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS  The...

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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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Cystinosis Sessions: July Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS ...

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Cystinosis Sessions: June Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. 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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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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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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Cystinosis Awareness Day – 2021

Welcome to the 4th Annual Cystinosis Awareness Day! Started in 2018, Cystinosis Awareness Day was created to bring attention...

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