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Rare Disease Day 2022

February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...

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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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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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Who We Love by Ina Gardener

They say sometimes it takes a village to help raise children, for us that village included two beautiful women....

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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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A Family of Great Givers by Cheryl Simoens

The great givers in my life are my family. I was born with a rare kidney disease known within...

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Strangers Brought Together by Destiny by Sara Healy

What started as a cystinosis awareness effort turns into a life-changing encounter. It all started with Jana (my twin...

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