event

2023 Family Conference Theme Revealed

After four years without an in person meeting, we invite you to strap on your boots for a trip...

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

This summer, Cystinosis Network Europe (CNE) will host an International Conference July 7-10 in Leuven, Belgium. The conference will...

The Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network...

Caregivers of children with cystinosis under 18 years old are invited. Join us for a video conference to connect...

Mark your calendars for the 2021 CRN Family Conference!

On April 25th, a free online conference is being provided by Cystinosis Network Europe (CNE) and Cystinosis Ireland. 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...