On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...
read moreThe CRN 2021 Family Conference is July 16 – July 18. In response to the COVID-19 pandemic, we’ve decided...
read moreLearn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University...
read moreHow will you honor the “rarest” day of the year? Check out our cystinosis awareness giveaway. Sign up and...
read moreCystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...
read moreLife with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...
read moreMy daughter, Deanna Lynn, was diagnosed with cystinosis 46 years ago in Houston, TX. At that time I did...
read moreThe CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This...
read morePeople from around the world joined the CRN Family Conference this summer to help “Ring in the Future”. Here...
read more