Recent Posts
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May 1st: “Two Rare Mama Bears” Podcast Launches!
“TWO RARE MAMA BEARS” PODCAST LAUNCHES TO FILL A UNIQUE NEED FOR RARE DISEASE COMMUNITY Like many so-crazy-it-just-might-work ideas, “Two Rare Mama Bears” was borne out of sleep...
May 3rd: Chase the Cure: Brenn Hill-Chase the Cure Benefit Concert
Brenn Hill-Chase the Cure Benefit Concert Dust off your cowboy boots…. This is a night you won’t want to miss! Brenn Hill will put on an amazing show....
123Genetix Launches #HackRare
123Genetix Launches #HackRare Crowdfunding Campaign to Advance Rare Disease Research ̶ Social enterprise looking to raise $20,000 (U.S.) on Indiegogo ̶ London, Ontario, Canada – April 19, 2018...
May 12th: Penelope Program Fundraiser: Tunes For Tosh 2.0 – 5k & 1 Mile Fun Run
Tunes For Tosh 2.0 – 5k & 1 Mile Fun Run by Shauna Bingham Please join us for a 5K or 1 Mile fun run on May 12th...
April 21st: Salt Lake City Half Marathon on Saturday
Flyer donated by Erica Braymen, Ecosyse Join us as we cheer on awareness for undiagnosed rare diseases! Please join the Rare and Undiagnosed Network (RUN) at the finish...
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...