Recent Posts

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2019 RUN’s NBA Initiative #RUNNBA

January 16, 2019 12:00 pm

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The Utah Jazz will honor 30 rare and undiagnosed children on the court as National Anthem Buddies on March 2nd, 2019. Derrick Favors, Rudy Gobert, Joe Ingles and...

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Undiagnosed Rare Disease Day is April 29, 2019!

January 16, 2019 10:00 am

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Join us to honor the Undiagnosed Rare Disease Community in April! All rare diseases were once undiagnosed. Governor Gary Herbert declared Undiagnosed Rare Disease Day in Utah!  What...

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Rare & Undiagnosed 101: Radiologists Matter

January 15, 2019 10:56 am

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 Updated January 15th, 2019: We had such a scare this past week with my father. He was not able to stay alert and he was sleeping all day....

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Running for Rare in the 2019 Boston Marathon

January 9, 2019 10:37 am

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The 2019 Boston Marathon is on Monday, April 15th! Dr. Lorenzo Botto is partnering with RUN as his community partner! Hello! My name is Dr. Lorenzo Botto. I am running to help families with...

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2019 RUN Awareness Campaigns & Programs

January 2, 2019 5:36 pm

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RUN is excited to continue on this journey with our rare and undiagnosed families with the generous support of our community in 2019! RUN Awareness Campaigns Rare Disease...

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

December 30, 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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Governor Gary Herbert Declares Rare Disease Day in Utah on February 28th, 2019!

November 30, 2018 4:46 pm

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Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases...

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RUN to Giving: A Global Day of Giving #GivingTuesday

November 27, 2018 10:50 am

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Today is #GivingTuesday Celebrated globally on the Tuesday after Thanksgiving, #GivingTuesday transcends borders and ideologies, to bring the entire world together in the spirit of generosity and giving....

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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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