On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in...
read moreFebruary 28, 2023 is Rare Disease Day. A movement created by Eurordis, Rare Disease Day unites an international community...
read moreOn May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...
read moreAdvoSci Health hosted a Cystinosis Case Competition this fall semester. Students were tasked with learning foundational information about cystinosis...
read moreInterim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.
read moreIn the late 1970’s, a hospitalization led to a cystinosis diagnosis which was uncommon at the time. Karen, and...
read moreThe Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered...
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 moreAdvocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...
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