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Rare Disease Day 2022

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

Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and...

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

Support the first annual Miles for Moose fundraiser.

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

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

The person I’m most grateful for is my sister Jennifer. Six and a half years ago my labs were...

The CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This...

The great givers in my life are my family. I was born with a rare kidney disease known within...