Seed-Balls for Cystinosis
(Left) Carter'(s last boat ride before G-J tube insertion. (Right) Look who turned 2! Over the last few years, Carter's family has taken a strong interest in monarch butterflies. Post […]
10 events found.
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Events
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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 […]
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57 Miles for Cystinosis
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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 […]
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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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5th Annual Cystinosis Awareness Day
FeaturedOn May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the world about cystinosis, a rare disease that impacts 2,000 patients and their loved ones. Please join us in commemorating this event. Here are a few suggestions on how to participate: Check out the Cystinosis Warrior Impact […]
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Cystinosis Awareness Day
Join us on and leading up to May 7th to promote cystinosis awareness, education and fundraising efforts. Our 7th annual awareness day campaign focuses on #CystinosisStereotypes with 3 ways go participate: share, create and/or donate. Share. Each day our community wakes up and challenges cystinosis stereotypes. Over the next few weeks we will be releasing […]
