awareness

Cystinosis Face Mask Fundraiser

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

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

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

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...

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...