Tag: Cystinosis Awareness Day

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...

57 Miles for Cystinosis

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...

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...