Tag: Cystinosis Awareness Day

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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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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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Cystinosis: A Blessing and a Burden

In order to think of what Cystinosis Awareness Day means to me I had to think about what cystinosis...

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