Run, don't walk

Organization: Rare and Undiagnosed Network

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  • Headquarters: Salt Lake City, Utah

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To be undiagnosed is like being a child without a home. Finding a treatment plan that includes genome sequencing is nearly impossible, and worse, insurance won’t cover any treatments, because there is no code to bill. But RUN is setting the pace of positive change.

When Gina Szajnuk’s three young children were diagnosed with an unknown genetic disorder, she was thrown into the maelstrom of modern health care. It threw her for a loop, and gave her a mission: the Rare and Undiagnosed Network, an organization that makes whole genome sequencing available and affordable for families facing crisis.

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