Posts tagged ‘Rare Disease’
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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’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...
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...
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...
“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...
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...
Recursion Pharmaceuticals Ribbon Cutting Ceremony
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...
University of Utah Health: Autoimmune Neurology Patient Day
“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...
“Undiagnosed: Avery’s Battle” by Alyssa Langston
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...