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HB211: Rare Disease Advisory Council did not pass this year.
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...
Press Release: Utah Jazz
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) –...
2019 RUN Awareness Campaigns & Programs
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...
2019 RUN’s NBA Initiative #RUNNBA
The Utah Jazz will honor 32 rare and undiagnosed children on the court as National Anthem Buddies on March 2nd, 2019. Derrick Favors, Rudy Gobert, Joe Ingles and...
Undiagnosed Rare Disease Day is April 29, 2019!
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...
HB211 Passed the Utah House Unanimously!
HB211, establishing a Rare Disease Advisory Council, passed the Utah House of Representatives unanimously on Friday, February 15th, 2019! Community members gathered to watch and listen from the...
Goodbye Steve. Fly High!
Today is Stephen “Steve” Mark Trummer’s Celebration of Life. He was born on January 15th, 1957. He died on February 4th, 2019. I cannot believe you are really...
Utah HB211: Rare Disease Advisory Council
Action Alert: The House of Representatives will consider HB211 this Friday, February 15, 2019 at 2:30, in the House Chamber. Community members can gather to watch and listen...
Casting Now: Individuals with Undiagnosed Medical Conditions
Update: Nina Kane, a casting associate, called to let us know that this documentary series for television has officially been picked up and will start filming soon. Nina...
“Our Journey to Diagnosis” by Carolyn Turner
JordynAnn was born after we lost our 7.5 week old son due to severe reflux who passed in December 2013, he was an organ donor. Little did we...