Rare and Undiagnosed Network
Began in Salt Lake City, Utah
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.
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.