Tag: awareness

Cystinosis Awareness Day – Discovering a New Type of the Disease

In the late 1970’s, a hospitalization led to a cystinosis diagnosis which was uncommon at the time. Karen, and...

CRN at 2021 Virtual PAS

The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered...

Rare Disease Day 2021

The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on...

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 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

Rare Disease Day 2020

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

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...

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...

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...