Recent Posts
Page 8 of 49
RUN’s NBA Initiative: NBA Teams Hosted Rare and Undiagnosed Families!
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...
Governor Gary Herbert Declares Rare Disease Day in Utah on February 28th, 2019!
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...
RUN to Giving: A Global Day of Giving #GivingTuesday
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....
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...
MediaPlanet: The NBA Pairs up with a Grassroots Nonprofit for Rare Diseases
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...
Clinical Trial: Primary Hyperoxaluria (PH)
OxThera is a biopharmaceutical company based out of Stockholm, Sweden, working to improve the lives of those with Primary Hyperoxaluria (PH). Our experimental drug, Oxabact®, is...
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...
#RUN2U: RARE TAMU at Texas A&M University
RARE TAMU is a student organization at Texas A&M University that works to spread awareness of RARE diseases. They are a National Organization for Rare Disorders (NORD)...
Miracle Flights: Kenneth’s Story
Miracle Flights provides individuals and families free medical flights to distant, specialized care and valuable second opinions. We have a #curefordistance. Below you will hear directly from...