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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)...
Our Jump Into the World of Rare Disease and Atypical HUS
Anne Bruns shares… January 2013 Legos, Green Bay Packers football and all things science were the focus of Ethan- a typical 8-year-old boy. Healthy and full of energy,...
Ricki Jensen shares her journey
Hi, my name is Ricki Jensen. You look at me and probably see just another normal face in a normal crowd. But there is more than what meets...
Rachel Nielson’s Update: No surgery last week
So just to clarify with everyone, I did not end up having surgery on Wednesday. There were some miscommunications between my doctor and the surgeon. The surgeon wanted...
Lucy admitted. Ava with “mast cell” like rash. Goodbye 2015! Praying for answers in 2016!
Spending the Holidays with yet another urgent care visit, ER visit and hospital admittance, it made me realize how much I wanted 2015 to end. We need 2016...
Rachel Nielson’s update
So this happened!?? Quick update: I’m going into surgery tomorrow to get a J tube placed into my stomach. It’ll be like my NJ except instead of going...