Recent Posts
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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...
National Ability Center: Saluting Our Heroes
Thank you to the National Ability Center (NAC) for including RUN at your Saluting Our Heroes luncheon. It is always such an honor to be a part of the...
Rare Disease Congressional Caucus Briefing November 15th
RUN is a proud partner of the Rare Disease Congressional Caucus An accurate diagnosis is usually the first step in developing a treatment plan for a patient, but it...
The Rarest of the Rare: Our Miracle Boy by Stefanie B.
Mothers should always be given credit for knowing their children. Find practitioners who will listen to you and care more about what you know than what they know. I started this blog to...
A Dream Come True! The Szajnuks meet Rachel Platten
We are all a “Lone Ranger” We all have our own “Fight Song” RUN will “Stand By You” Together we are RUN family We Can Do Hard Things...