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Living in a
Diagnostic Odyssey...


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 empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
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.
  • 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.


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

“Undiagnosed For TWO Years” by Hailey Sampsel

October 18, 2016 2:04 am

7 pledge likes

Two years ago, my health journey started and my whole life changed. Instead of my life of competitive tumbling, running track, and being a straight A student. My...

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Utah Rare’s Journey

October 7, 2016 5:41 am

7 pledge likes

It was an honor to share my journey with Utah Rare at the Global Genes RARE Patient Advocacy Summit along with Sharon King of Taylor’s Tale and the NC Rare Disease Network. The breakout...

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Robyn Forsythe shares her updates on her son, Calen

October 3, 2016 4:09 pm

6 pledge likes

Friday, September 30th: Calen is up and down. He spiked a fever last night and was very uncomfortable but once fever broke he was great through the night....

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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.

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