The Myrtle Beach National Golf Club is hosting a golf tournament benefitting the Cystinosis Research Network on Saturday, August...
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 the one year anniversary of Laura McGinnis’ passing, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life...
read moreOn Thursday, July 2nd, the CRN announced a face mask fundraiser to help create awareness, bring in donations and...
read moreCystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...
read moreThe person I’m most grateful for is my sister Jennifer. Six and a half years ago my labs were...
read moreThe CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This...
read moreI first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...
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