Tag: awareness

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Miles for Moose

Support the first annual Miles for Moose fundraiser.

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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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A Tale of Two Kidneys by Jana Healy

The person I’m most grateful for is my sister Jennifer. Six and a half years ago my labs were...

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My Definition of Cystinosis By Ana Francisco

I first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...

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I Am Not My Disease by Steve Schleuder

Life with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...

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A Cystinosis Journey by Gail Potts

My daughter, Deanna Lynn, was diagnosed with cystinosis 46 years ago in Houston, TX.  At that time I did...

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