Giving Tuesday
The CRN is a proud participant in Giving Tuesday - a global movement encouraging people to "do good." This is our fifth year celebrating the event that has inspired millions […]
10 events found.
fundraiser
Events
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57 Miles for Cystinosis
DE, United States -
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 marks the third year we've come together on this day to […]
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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 in pursuit of adventure, making memories every step of the way. We'd like to keep her spirit alive by fulfilling as many "fun" requests for the cystinosis community as possible. To grow our funding, we are […]
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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 patients' lives. This year's Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud. This theme is our call to action. Let’s elevate our voices as a united rare disease community. […]
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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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CRN Golf Tournament: Myrtle Beach
FeaturedMyrtle Beach National Golf Club 4900 National Drive, Myrtle Beach, SC, United StatesThe Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network on Saturday, August 14th. Click here to register today or make a donation through this website.
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A Benefit for Elle
FeaturedThe Hilltop 950 Pavillion Street, Cincinnati, OH, United StatesJoin The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and her family, friends and community have supported her every step of the way. Her father is Jon Dicks, President of the Cystinosis Research Network. You can read about the first few years of her journey as […]
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Rare Disease Day 2022
FeaturedFebruary 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the global event campaigns for equity for the over 7,000 rare diseases currently identified. Among those rare diseases is cystinosis. Cystinosis is a genetic, lysosomal storage disorder where unusual cystine accumulation occurs in every cell in the […]
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2nd Annual SC Golf Fundraiser
FeaturedWild Wing Avocet Golf Course 1000 Wild Wing Boulevard, Conway, South CarolinaGail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser to benefit the Cystinosis Research Network (CRN). Proceeds from the event will support research, family support and education for those impacted by cystinosis. This […]
$65
