The Adult Leadership Advisory Board (ALAB) created custom designed bandanas for your furry friends. Your donation provides support for...
read moreOn May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...
read moreFebruary 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...
read moreJoin The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and...
read moreThe Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network...
read moreThe goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on...
read moreOn Thursday, July 2nd, the CRN announced a face mask fundraiser to help create awareness, bring in donations and...
read moreThe person I’m most grateful for is my sister Jennifer. Six and a half years ago my labs were...
read moreThe great givers in my life are my family. I was born with a rare kidney disease known within...
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