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RUN’s NBA Initiative: NBA Teams Hosted Rare and Undiagnosed Families!

November 14, 2018 10:40 am

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The  Utah Jazz  honored 30 rare and undiagnosed children and their siblings on the court as National Anthem Buddies on March 17th, 2018! Ricky Rubio and Alec Burks...

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Recursion Pharmaceuticals Ribbon Cutting Ceremony

November 8, 2018 10:28 am

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In 2014, the Utah Rare Executive Committee met in the first Recursion conference room when they had only 13 employees. Together, we started a coalition for rare disease stakeholders...

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MediaPlanet: The NBA Pairs up with a Grassroots Nonprofit for Rare Diseases

November 8, 2018 9:24 am

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We recently participated in Mediaplanet’s Rare Diseases campaign where we united with likeminded industry leaders to educate Americans on the urgent need to gain public, private and federal...

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Clinical Trial: Primary Hyperoxaluria (PH)

November 7, 2018 10:00 am

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    OxThera is a biopharmaceutical company based out of Stockholm, Sweden, working to improve the lives of those with Primary Hyperoxaluria (PH). Our experimental drug, Oxabact®, is...

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University of Utah Health: Autoimmune Neurology Patient Day

November 3, 2018 11:12 pm

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“The Autoimmune Neurology Patient Day was an opportunity for patients, family, and friends to learn more about the latest advances in Autoimmune neurology and to share experiences with...

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“Undiagnosed: Avery’s Battle” by Alyssa Langston

October 24, 2018 9:14 pm

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It started when he was 6 months old. He was getting fevers and frequent ear infections like clockwork. Every 28-30 days on the dot, his fever would spike...

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#RUN2U: RARE TAMU at Texas A&M University

October 18, 2018 10:14 am

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  RARE TAMU is a student organization at Texas A&M University that works to spread awareness of RARE diseases. They are a National Organization for Rare Disorders (NORD)...

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Miracle Flights: Kenneth’s Story

October 17, 2018 10:04 am

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  Miracle Flights​ provides individuals and families free medical flights to distant, specialized care and valuable second opinions. We have a #curefordistance. Below you will hear directly from...

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A Major Cable Network Wants to Hear From You

October 13, 2018 5:54 pm

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A Major Cable Network is seeking individuals who are battling unknown medical conditions for a new ground-breaking television series. If you have run out of options and don’t...

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“What is the hardest part of being undiagnosed?” by Gina Szajnuk

October 12, 2018 10:09 am

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What is the Hardest Part of Being Undiagnosed?” by Gina Szajnuk Photo by Season Atwater, Aware of Angels When The Mighty and the National Organization for Rare Disorders...

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