Charleston Cystinosis Meetup
Coming Soon!
10 events found.
Events
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Hilton Garden Inn 300 Wingo Way, Mt. Pleasant, SC
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Stand Up to Cystinosis
Florence Strength and Conditioning 330 Weaver Road, #100, Florence, KYSaturday, February 23, 2019 from 10:00 am – 4:00 pm We created this event to help raise money for cystinosis because this disease is something very near and dear to […]
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Rare Disease Day
February 28, 2019 Worldwide Here's a fun way to "Share Your Rare" this Rare Disease Day - sign up for a free cystinosis ribbon temporary tattoo. Spread cystinosis awareness on […]
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Patient Congress
Hilton at Penns Landing 201 South Christopher Columbus Blvd, Philadelphia, PAThe PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide. The Patient Congress is […]
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Pediatric Academic Societies (PAS) Annual Meeting
FeaturedBaltimore Convention CenterThe PAS Meeting brings together thousands of pediatricians and other health care providers united by a common mission: improve the health and well-being of children worldwide. Every one of the […]
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2nd Annual 57 Miles for Cystinosis
Sussex Central High School 26026 Patriots Way, Georgetown, DE, United States -
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2019 CRN Family Conference
FeaturedHilton at Penns Landing 201 South Christopher Columbus Blvd, Philadelphia, PARing in the future with us at the 2019 Family Conference. The weekend is filled with research updates from clinicians and international cystinosis organizations, opportunities to meet and renew friendships, […]
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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 diagnosis, Grandmom (Carrie) knew she wanted to create an event to honor his resilient spirit. To celebrate Carter's second birthday and new found love for […]
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Global Genes: Rare Patient Advocacy Summit
Sheraton San Diego Hotel & Marina 1380 Harbor Island Drive, San Diego, CA, United StatesOn behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops. Global Genes […]
