Search results for ‘Rachel Nielsen’
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Undiagnosed Rare Disease Day on April 29th, 2019!
Join us to honor the Undiagnosed Rare Disease Community in April! All rare diseases were once undiagnosed. Today marks the first day of RUN’s Undiagnosed Rare Disease Day...
Undiagnosed Rare Disease Day is April 29, 2019!
Join us to honor the Undiagnosed Rare Disease Community in April! All rare diseases were once undiagnosed. Governor Gary Herbert declared Undiagnosed Rare Disease Day in Utah! What...
#RUNNBA: Meet our Utah Jazz National Anthem Buddies!
In 2015, we started RUN’s NBA Initiative through the generosity of the Utah Jazz and the Larry H. Miller family. We were so excited to continue our initiative...
Today is Undiagnosed Day! Join Us to Honor the Undiagnosed Rare Disease Community
All rare diseases were once Undiagnosed. What does “Undiagnosed” mean? “An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease...
RUN’s Journey
My name is Gina Szajnuk and I am the mother of three children with an undiagnosed genetic dysfunction. I am also undiagnosed. We live in a diagnostic odyssey...
Media
RUN in the MEDIA LINKS Rare & Undiagnosed Network Provides Advocacy, Networking and Support for Patients and Families Utah Rare Disease Day Recap 2023 Global Genes Patient Advocacy...
Faith-based movie “Miracles From Heaven” misses opportunity to raise awareness for the majority of rare disease families
Thank you to the filmmakers for making the movie “Miracles From Heaven” with Jennifer Garner. It is the real-life story of Annabel, who suffered from a rare disease....
Rare Mom’s Letter to Hollywood: “Miracles from Heaven”
Dear Hollywood, As a mother of three rare and undiagnosed children and the Co-founder of the Rare & Undiagnosed Network (RUN), thank you for making the movie “Miracles...
Advisory Board
The RUN Advisory Board Mission & Vision Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions. Urge insurance companies to reimburse genome sequencing in...