Primary Children’s Gene Kids is a $9 million program to provide a genomic diagnosis to every child with a possible genetic condition. Our goal is to integrate diagnosis, discovery, and treatment to reach children and families who may benefit, regardless of their location or insurance, by ensuring access to whole genome sequencing (WGS). Gene Kids […]
The Stakeholders, Partners, and Communications Workgroup has been focused on expanding awareness of the Utah Rare Disease Advisory Council (RDAC), strengthening relationships with key stakeholders, and increasing engagement with both policymakers and the rare disease community. One of our primary goals has been to help more individuals and organizations understand who the Utah RDAC […]
With a brand new PhD in geochemistry, I joined an oilfield service company, spending four years on special projects in the company research lab in Connecticut and two years as a geochemist advisor to the operations part of the company in Houston and Dallas. When oilfield drilling activity in the US plummeted, I was laid […]
On July 18, 2026, members of the Utah Rare Disease Advisory Council (RDAC) were honored to participate in Canyon Rim Cares, an annual day of service that brought together nonprofit organizations, volunteers, community leaders, and residents who share a commitment to strengthening our communities through service and connection. Throughout the event, RDAC members had the […]
We gave our youngest son the name of Andrew because it means “strong and manly.” When I was pregnant with him, a routine ultrasound showed that he would be born with clubbed feet. We knew then that he would need all of the strength he could get. Shortly after he was born, we took him […]