Recent Posts

Page 1 of 43

RUN’s NBA Initiative: NBA Teams Hosted Rare and Undiagnosed Families!

November 14, 2018 10:40 am


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...

Continue Reading

Recursion Pharmaceuticals Ribbon Cutting Ceremony

November 8, 2018 10:28 am


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...

Continue Reading

MediaPlanet: The NBA Pairs up with a Grassroots Nonprofit for Rare Diseases

November 8, 2018 9:24 am


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...

Continue Reading

Clinical Trial: Primary Hyperoxaluria (PH)

November 7, 2018 10:00 am


    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...

Continue Reading

University of Utah Health: Autoimmune Neurology Patient Day

November 3, 2018 11:12 pm


“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...

Continue Reading

“Undiagnosed: Avery’s Battle” by Alyssa Langston

October 24, 2018 9:14 pm


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...

Continue Reading

#RUN2U: RARE TAMU at Texas A&M University

October 18, 2018 10:14 am


  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)...

Continue Reading

Miracle Flights: Kenneth’s Story

October 17, 2018 10:04 am


  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...

Continue Reading

A Major Cable Network Wants to Hear From You

October 13, 2018 5:54 pm


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...

Continue Reading

“What is the hardest part of being undiagnosed?” by Gina Szajnuk

October 12, 2018 10:09 am


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...

Continue Reading