Recent Posts
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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...
A Major Cable Network Wants to Hear From You
A Major Cable Network is seeking individuals who are battling unknown medical conditions for a new ground-breaking television series. If you have run out of options and don’t...
RUN Education Series
We are thrilled to announce our new RUN Education Series coming in 2019! We are excited to expand our programming and to continue to meet the needs of...
Documentary Series looking for Undiagnosed Patients
The New York Times Magazine’s long-running Diagnosis column, written by Dr. Lisa Sanders, has undertaken an exciting new crowd-sourcing experiment in which you— the reader— can write in to help diagnose patients dealing with real-time medical mysteries. These...