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2nd Annual SC Golf Fundraiser

Gail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail...

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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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Miles for Moose 5.7 Mile Virtual Walk/Run

Support the first annual Miles for Moose fundraiser.

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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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LLLFF Virtual 5K

On the one year anniversary of Laura McGinnis’ passing, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life...

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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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Cystinosis Awareness Day – 3rd Annual

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...

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57 Miles for Cystinosis

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