Recent Posts
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RUN’s 2018 Rare Disease Day!
RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...
Becoming Incurable: A film dedicated to chronic illness by Victoria Suan
RUN is proud to announce our new partnership! Please meet Victoria Suan! She is the incredible filmmaker behind the documentary Becoming Incurable: A film dedicated to chronic illness...
Utah: Rare Disease Day & Undiagnosed Rare Disease Day
Thank you to Governor Gary Herbert for both of his Declarations Rare Disease Day on February 28th & Undiagnosed Rare Disease Day on April 29th Rare Disease Day...
RARE Carousel of Possible Dreams! Help Us Fundraise!
Please consider joining our team and help us power up our fundraising efforts! Dear Friends and Family, The Rare and Undiagnosed Network (RUN) is participating in the...
2018 Utah Rare: RARE ANGELS Tribute
We are creating a RARE ANGELS Tribute for our upcoming Utah Rare event on March 3rd. If you have a RARE ANGEL in your family or know of someone...
Register now for our 4th Annual Utah Rare Symposium
Registration for the 2018 Utah Rare Symposium is now OPEN! Please share with your rare friends and rare disease community! We have a great day planned and are...
Mother Trying to Raise Awareness of Rare Genetic Disease Linked to Autism
My name is Sandra Sermone and I spent 6 long years trying to get my son diagnosed. During those years he endured multiple operations, hundreds (no lie) hospitalizations, and countless...
Wishing you a Safe and Healthy 2018!
As 2017 comes to an end, we want to wish you all a safe and healthy 2018! Thank you to all of our RUN families for continuing to...
“Sweet Surprises” by Kathleen Ann
Each day, we have a new chance to rewrite our day from the learned experiences before. We have the chance to pick out what clothes we are going...
Szajnuk Update: Ava Szajnuk and our Undiagnosed Rare Disease
Ava Szajnuk’s CT on November 16, 2017: Technology is beautiful. Ava recently fell and hit her head in gym class. She suffered a head injury and a...