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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...
“What is the hardest part of being undiagnosed?” by Gina Szajnuk
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...
Running for Rare in the 2019 Boston Marathon
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...
Rare & Undiagnosed 101: Radiologists Matter
Updated April 28th, 2020: My father suffered through a cardiac arrest during the half-time of the Rose Bowl on New Year’s Day 2020. He was in the ICU...