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Cystinosis Awareness Day

On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in...

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

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

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

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

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

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

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

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