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Pet Fundraiser Benefitting Adults with Cystinosis

The Adult Leadership Advisory Board (ALAB) created custom designed bandanas for your furry friends. Your donation provides support for...

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5th Annual Cystinosis Awareness Day

On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...

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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...

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A Benefit for Elle

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

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CRN Golf Tournament: Myrtle Beach

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

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Rare Disease Day 2021

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

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Cystinosis Face Mask Fundraiser

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

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57 Miles for Cystinosis

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A Tale of Two Kidneys by Jana Healy

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

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A Family of Great Givers by Cheryl Simoens

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

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