Tag: cystinosis

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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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Cystinosis Session: May Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. The...

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Miles for Moose 5.7 Mile Virtual Walk/Run

Support the first annual Miles for Moose fundraiser.

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CRN at 2021 Virtual PAS

The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered...

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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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