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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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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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Rare Disease Day 2021

The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on...

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Cystinosis Face Mask Fundraiser

On Thursday, July 2nd, the CRN announced a face mask fundraiser to help create awareness, bring in donations and...

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Advocating For Our Daughter’s Rare Disease

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

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Cystinosis Awareness Day – 3rd Annual

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...

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57 Miles for Cystinosis

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Rare Disease Day 2020

How will you honor the “rarest” day of the year? Check out our cystinosis awareness giveaway. Sign up and...

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