Recent Posts
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Rare Teen Photo Shoot by Aware of Angels, Utah Rare and RUN!
The RARE TEEN PHOTO SHOOT was a HUGE success! Season Atwater, Aware of Angels, is such a talented photographer! Thank you to Angel Benson, Maddie Benson, Julie Jackson, Kristen Packard, Rebecca...
Rachel Nielson at the University of Utah ER
After a fun day at the Rare Teen Photo Shoot yesterday, Rachel threw up her feeding tube and then passed out last night when she got home. She...
RUN Supports The Epilepsy Association of Utah (EAU): Student Advocacy Groups Oppose Utah Bill HB75
The Epilepsy Association of Utah (EAU) is reaching out to organizations who, in part or wholly, advocate for students with medical conditions. The EAU and RUN ask for your help...
Bio: Gina Zanik (Szajnuk)
Gina Zanik (Szajnuk) started her career in the entertainment industry. She worked in Hollywood for over ten years. She supported movie directors, producers, actors, literary agents and executives....
Maryel Maguire shares her journey with her daughter, Katie, and Mastocytosis
Katie was born May 10, 2000 in Washington state. Her big brother Kyle was so excited to meet his new little sister. Our journey started when Katie was...
NORD’s Rare Disease Day Honored by the NBA Utah Jazz and now the NBA Washington Wizards! Discounted tickets for $23!
Since the relationship with Utah Rare, the National Organization for Rare Disorders (NORD) and the NBA Utah Jazz was such a HUGE SUCCESS for our Rare & Undiagnosed Network (RUN) last year, we are DREAMING...
Please visit our NEW Utah Rare website and REGISTER for our 2016 Utah Rare Disease Day Events!
2016 Utah Rare Disease Day Events are NOW OPEN for REGISTRATION on our NEW Utah Rare website! As the Utah State Ambassador for the National Organization for Rare Disorders (NORD), it is an...
Angela shares her journey with her daughter, Ella Pauline Dignan. One of our Rare Angels.
Ella Pauline Dignan was born on June 22, 2012, and spent the following 4 days in NICU. She was born with Dandy Walker Syndrome and Hydrocephalus. Ella’s parents were...
Jaclyn Tapia shares her journey with her daughter, Emma
Emma was born on March 20, 2015 via c-section (planned-a repeat) after a healthy and normal pregnancy. She seemed to be a perfectly healthy baby. She was discharged...
Amy Peedle shares her journey with her daughter, Aliyah.
Amy Peedle: Aliyah was born March 9th, 2001. She weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...