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Aliyah-VACTERL Assoc., Gastroparesis, Chronic Lung Disease
Aliyah is 14 when she was born she weighed 3lb 10oz. She has the VCTE of the VACTERL Association (V) = vertebral abnormalities (A) = anal atresia (C)...
Rachel Nielsen: “Daughter of a King.”
I’ve always had problems growing up. When I was born, I was 6.5 lbs. When I was 4 years old, I was still the size of an 18...
Necia Munro shares her journey with her daughter, Hallie
Necia Munro: When Hallie was born and her doctor told me she was just a “little peanut”, I knew instinctively that something was wrong. It took us many...
Meet our Son Bridger Trey Penney
Chelsea Penney: There are hardly words to describe that moment, after nine months of planning and preparing, you finally get to meet and hold that precious baby. Then...
RAREcast: Jazzed in Utah for World Rare Disease Day
What an honor to be interviewed by Daniel Levine! Thank you to the RARE Daily by Global Genes! You can access it at RAREcast: Jazzed in Utah for World...
Aliyah Peedle will need surgery this week. When heading home from hospital tonight, they were rear-ended. Now, waiting to hear if admitted.
Amy Peedle: “Aliyah got something stuck in her esophagus 10 days ago and has not been able to eat anything by mouth, she was able to drink some...
Rare Genomics Institute- A Resource for Undiagnosed Patients and Their Families
What is the Rare Genomics Institute? The Rare Genomics Institute (RG) is an international non-profit organization that provides rare disease patients with access to cutting edge research technologies, physicians,...
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...