Recent Posts

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Honoring Charlee Nelson’s Fifth Angelversary

March 15, 2019 12:00 pm


Charlee continues to guide RUN’s mission and has been such an inspiration to our family. She touched our hearts forever when we celebrated her one year Angelversary on...

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RARE Evolution

March 14, 2019 12:00 pm


RUN is excited to have you be a part of our first RUN Educational Series with Recursion Pharmaceuticals. This event is designed to inspire, motivate, and spark collaboration among...

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HB435: Undiagnosed Children Insurance Coverage Bill Passed!

March 14, 2019 12:00 pm


“A bill that I informally named “Marley & Tyler’s Bill” passed yesterday! It will help provide coverage to undiagnosed children. My recently diagnosed daughter and a boy named...

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RUN’s NBA Initiative: Utah Jazz National Anthem Buddies on March 2nd, 2019!

March 9, 2019 12:00 pm


The Utah Jazz honored 32 rare and undiagnosed children on the court as National Anthem Buddies on March 2nd, 2019. Derrick Favors, Rudy Gobert, Joe Ingles and Ricky...

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Utah HB435 Passed The House of Representatives!

March 5, 2019 12:00 pm


Update: Senator David Buxton is supporting HB435 in the Senate March 5th, 2019 at 7:30p UPDATE: HB435, Undiagnosed Children Insurance Coverage, passed the Utah House of Representatives unanimously...

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RUN Educational Series: Speaking Opportunity

March 5, 2019 10:00 am


Have you participated in a clinical trial and are open to sharing your experience at a future RUN Educational Series event on clinical trials? If you are a...

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HB211: Rare Disease Advisory Council did not pass this year.

March 4, 2019 12:00 pm


March 16th, 2019: As the Utah 2019 Legislative Session wraps up, we have reason to celebrate, and reason to keep hard at work. HB211, the proposal for a...

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Campaign Begins for Undiagnosed Rare Disease Day on April 29th, 2019!

March 1, 2019 12:00 pm


Join us to honor the Undiagnosed Rare Disease Community in April! All rare diseases were once undiagnosed. Today marks the first day of RUN’s Undiagnosed Rare Disease Day...

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Press Release: Utah Jazz

February 28, 2019 9:27 pm


Jazz to Recognize Children from Rare and Undiagnosed Network at March 2 Game Youth to Stand with Jazz, Bucks During National Anthem SALT LAKE CITY (February 28, 2019) –...

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2019 RUN Awareness Campaigns & Programs

February 26, 2019 12:00 pm


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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