Recent Posts
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DHPS Foundation: Our genetics make us unique, our struggles and triumphs unite us.
Our genetics make us unique, our struggles and triumphs unite us. In April 2007, my husband and I found out we were expecting our first child. We were...
Isabelle George: Cute but Defective
Isabelle was born on St Patrick’s Day 2008. We call her the luckiest girl in the world. She came home on monitors because no one knew why her...
Mediaplanet: “Undiagnosed” Persists as an Ominous Diagnosis for Rare Disease Patients
RUN 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...
For our family, dysautonomia is not our final diagnosis.
“For our family, dysautonomia is one of many syndromes listed. It is not our final diagnosis. We want to get to the root cause of our undiagnosed disease...
“Our Lucky Leprechaun” by Ciara Luke
“Our Lucky Leprechaun” by Ciara Luke Our little leprechaun, Preston, was born in 2014 on St. Patrick’s Day. He grew like most infants, right along the growth chart...
Upcoming RUN Involved Events and Projects
Rare and Undiagnosed Network (RUN), a rare and undiagnosed disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing...
Fourth Annual Utah Rare Symposium
Our Fourth Annual Utah Rare Symposium was a huge success this past weekend! Thank you to our 2018 Utah Rare Chair, Tristin West! Thank you to all of...
#RUNNBA & #UndiagnosedDay
Between the NBA Playoffs with the Utah Jazz and raising awareness for our Undiagnosed Rare Disease Day this coming Sunday, it has already been a very emotional week!...
RUN’s 2018 Rare Disease Day!
RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...
Becoming Incurable: A film dedicated to chronic illness by Victoria Suan
RUN is proud to announce our new partnership! Please meet Victoria Suan! She is the incredible filmmaker behind the documentary Becoming Incurable: A film dedicated to chronic illness...