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Living in a
Diagnostic Odyssey...

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Take the Pledge to RUN

RUN stands for Rare & Undiagnosed Network. We're a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision:
 
to bring genome sequencing into clinical practice to help undiagnosed patients better understand these conditions – and to join together as we improve the lives for all those affected.
 
Nearly 1 in 10 of your friends, family, and colleagues are living with a rare or undiagnosed disease – half are children.
Join the RUN community and change everything.

Take the Pledge Experience RUN

To All Mothers, Fathers, & Loved Ones

I am Gina Szajnuk and I am a mother of three young children – each of whom have been diagnosed with an unknown genetic dysfunction: an autonomic neuropathy.
 
I am determined to help my children and the children of all mothers living in a diagnostic odyssey. Join me on RUN's mission to set a new standard of care for all other families by making whole genome sequencing available through insurance.
 
Together, we can help families emotionally and financially living with an undiagnosed child, or a child with a rare condition.

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LATEST PROFILES | View all profiles »

Profiles of individuals and families in the Rare & Undiagnosed Network. Read, inspire, and pledge.
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  • Our mission is to create a bridge between doctors, hospitals, researchers and families across the globe to help bring whole genome sequencing to patients who need it.

  • Our mission is to set the standard of care for all families on a medical odyssey by making whole genome sequencing available to them through their insurance company as well as to help families emotionally and financially living with an undiagnosed child or a child with a rare condition.

LATEST POSTS

Explore the struggle and triumph nearly 1 in 10 Utah mothers, fathers, sons, and daughters face while living in their diagnostic odyssey.

Running for RUN: Taking Awareness to the Next Level by Jesse Marimat

July 12, 2016 6:40 pm

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I never considered myself an athlete. Growing up, I had juvenile asthma, and struggled to run “the mile” in high school. The furthest extent of my physical activity...

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UNDIAGNOSED is a DIAGNOSIS: The Szajnuk’s Journey

June 28, 2016 10:40 am

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UNDIAGNOSED IS A DIAGNOSIS: Living in a Diagnostic Odyssey x 4 By Gina Szajnuk  I have three children that are officially diagnosed as Undiagnosed. They have an Undiagnosed...

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Amy Muller shares her journey and wants to help RUN families through Accessible Systems

June 27, 2016 6:40 pm

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  It was five years ago on a beautiful May afternoon when I received a phone call that would change my life. My daughter was at a friend’s...

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Living in a Diagnostic Odyssey

Imagine for a moment you wake up each morning with the same first thought –- day in and day out. Some mornings, you smile. Many others, you begin with the day with worry, concern, and fear of the unknown.
Meet Gina and her three adorable children. Their story is all too common for those living with a rare or undiagnosed disease.