Legislative Workgroup Report
Prepare for Utah Medicaid Changes in 2027 Some people insured through Medicaid will face new eligibility requirements in 2027 as part of a wide-sweeping federal law enacted in 2025, referred to as H.R. 1 or the “One Big Beautiful Bill Act (OBBBA)”. Those changes include new work requirements and more frequent eligibility redetermination. Exclusions and […]
Council Member Narrative by Sally Jo Zuspan
Much of my career has focused on building the systems that help important research questions become meaningful evidence—and, ultimately, better care. I began as a pediatric trauma and emergency nurse and worked to improve pediatric emergency care in various pediatric hospitals. As a senior leader at the University of Utah Data Coordinating Center, our work […]
Utah Parent Center: Serving Utah’s Disability Community
For a family navigating a rare genetic condition, the journey often feels lonely. There are medical appointments, therapies, school meetings, unfamiliar systems, and questions about what the future will hold. Even when families are surrounded by knowledgeable professionals, there is something uniquely powerful about connecting with someone who has been there, too. That connection is […]
Stakeholder Feature: Primary Children’s Gene Kids & Center for Personalized Medicine
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 […]
Stakeholders, Partners, and Communications Workgroup Report
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 […]
RDAC Member Feature: Marian Furst
With a brand new PhD in geochemistry, I joined an oilfield service company, spending four years on special projects in the company’s 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 […]
RDAC at Canyon Rim Cares
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 […]
Rare Voices: Sarah & Andrew Jeffs
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 […]
Denali Therapeutics Announces FDA Approval of Treatment for Hunter Syndrome
First new FDA-approved treatment option in nearly 20 years for families living with this rare lysosomal storage disease First FDA-approved medicine in emerging new class of biotherapeutics that leverage transferrin receptor to cross blood-brain barrier Denali’s first medicine enabled by its TransportVehicle™ platform designed to deliver biotherapeutics to whole body, including brain Rare Pediatric Disease […]
RDAC, Governor Cox & The Utah Jazz Honor Rare Disease Day 2026
Thank you to the Utah Jazz and Governor Cox for honoring Rare Disease Day and the work of the Rare and Undiagnosed Network (RUN) and the Utah Rare Disease Advisory Council! It was a very special evening for all of us. It was wonderful to see our rare families. There were a lot of hugs […]