Utah Rare Disease Advisory Council

07/31/2026

One of our favorite moments at Canyon Rim Cares was seeing our friend Laura Hadley from the Cystic Fibrosis Foundation!

Their service project was a beautiful reminder of the power of community. Volunteers assembled activity kits for children to use during long medical appointments, helping pass the time while reminding families that so many people are cheering them on.

Thank you to Laura and the Cystic Fibrosis Foundation for the incredible work you do to support children and families. We are grateful to partner with organizations that share our commitment to creating a more connected, compassionate, and supportive community for families living with rare diseases and complex medical conditions.

07/29/2026

On July 18, members of the Utah Rare Disease Advisory Council (RDAC) were honored to participate in Canyon Rim Cares, an inspiring day of service that brought together incredible organizations, volunteers, and community members dedicated to making a difference.

Throughout the event, RDAC members shared information about the Council, raised awareness of rare diseases, and connected families with valuable resources and support available throughout Utah.

Thank you to , for organizing the event and thank you to the volunteers and everyone who stopped by to learn more about the rare disease community. Together, we are building greater awareness, stronger connections, and a more supportive future for individuals and families living with rare diseases.

07/28/2026

The Utah Rare Disease Advisory Council (RDAC) is excited to help spread the word about the Annual Utah Leukodystrophy Family Day, hosted by Dr. Josh Bonkowsky's Lab at the University of Utah and the Utah Leukodystrophy Center.

🗓 Saturday, October 10, 2026
🕘 9:00 AM – 12:00 PM
📍 RendeZoo Room, Utah's Hogle Zoo | Salt Lake City

This special event brings together individuals living with leukodystrophy, their families, caregivers, clinicians, and researchers for a morning of connection, support, and community. Attendees will have the opportunity to meet other families with shared experiences, learn about ongoing research and clinical advancements, and connect with the team led by Dr. Josh Bonkowsky at Intermountain Primary Children's Hospital and University of Utah Health.

At the Utah RDAC, we believe that connecting families, researchers, healthcare providers, and advocates strengthens Utah's rare disease community. If your family has been affected by leukodystrophy, we encourage you to attend and take advantage of this meaningful opportunity to build relationships, share experiences, and learn about the latest research.

We hope to see many members of our rare disease community there!

06/26/2026

Meet the RDAC: Linnea Overacker, Council Member

Linnea Overacker has extensive experience navigating complex healthcare and coverage systems, interpreting regulatory and policy considerations, and working with diverse stakeholders in environments that demand precision, discretion, and long-term accountability. Much of her work has focused on demonstrating how benefit design, administrative processes, and policy decisions directly affect patient access, affordability, and continuity of care.

She brings a thoughtful, patient-centered perspective informed by firsthand exposure to the realities faced by individuals with rare conditions. These include delays in diagnosis, limited treatment options, coverage barriers, and the significant burden placed on patients and caregivers to navigate fragmented systems while managing serious health needs. These challenges are not theoretical; they have real and lasting consequences for families.

Linnea is particularly interested in the RDAC’s role in identifying systemic gaps, elevating patient experience alongside clinical and economic considerations, and providing grounded, actionable recommendations to state leadership. She values collaborative, multidisciplinary advisory work and desires to improve outcomes for individuals and families living with rare diseases in Utah.

06/23/2026

Meet the RDAC: Leah Frank, Council Member

Leah is an administrative intern at Primary Children's Hospital and is currently completing her Master of Healthcare Administration at Weber State University. She earned her Bachelor of Science in Health, Society, and Policy from the University of Utah. Leah previously served as a clinical liaison between HCA Healthcare and Galen College of Nursing, where she facilitated collaboration between clinical and academic teams.

As a patient advocate for individuals with complicated and rare disorders, Leah brings both professional and personal experience to her work. Having lived through the challenges of an undiagnosed condition beginning in childhood, she is particularly passionate about improving care for pediatric rare disease populations.

Through her role at Primary Children's Hospital and her membership in the RDAC, Leah looks forward to advancing awareness and strengthening support for patients and families.

06/19/2026

Members of the Utah Rare Disease Advisory Council (RDAC) joined fellow advocates at a recognition lunch honoring Senator John Johnson and Representative Katy Hall for their leadership in passing SB 319 during the 2026 Utah Legislative Session.

SB 319 strengthens prior authorization requirements by increasing transparency, setting decision deadlines, requiring disclosure of AI use, and providing longer authorization periods for chronic and long-term conditions.

We are grateful for their commitment to advancing policies that support Utah families and improve health outcomes for those living with rare diseases.

05/20/2026

RDAC Policy and Legislative Workgroup Report, Utah General Session 2026

More than 1,000 bills and resolutions were introduced during the 45-day Utah legislative session from January 20 to March 6. The RDAC Legislative Committee screened all bills and resolutions for relevance to the rare and undiagnosed disease community and prioritized its efforts based on the RDAC Policy Guide and subject matter it deemed urgent in newly introduced legislation.

Read more: https://utahrdac.org/workgroup-report/

05/20/2026

Thank you to the Utah Jazz and Governor Cox for honoring Rare Disease Day and the work of the and the ! It was a very special evening for all of us. It was wonderful to see our rare families. Read more...

https://utahrdac.org/rdac-governor-cox-the-utah-jazz-honor-rare-disease-day-2026/

05/15/2026

The latest Utah RDAC Quarterly Newsletter is here! 📰✨

Catch up on advocacy updates, community highlights, upcoming events, resources, and the important work being done to support Utah’s rare disease community.

We’re grateful for everyone helping raise awareness, build connections, and create meaningful change for rare families across Utah. 💙

Read the newsletter here: https://utahrdac.org/news/

05/15/2026

We applaud the incredible work being done through the Primary Children’s Gene Kids initiative to expand access to whole genome sequencing for children with suspected genetic disorders.

For so many rare and undiagnosed families, the “diagnostic odyssey” can take years — often filled with uncertainty, misdiagnosis, and unanswered questions. Programs like Gene Kids are helping change that by making advanced genetic testing more accessible to children across Utah and the Intermountain West, regardless of location or financial barriers.

This is exactly the kind of innovation, collaboration, and investment that gives families hope, leads to earlier diagnoses, improves care, and advances the future of rare disease treatment and research.

Thank you to the teams at Intermountain Primary Children's Hospital and University of Utah Health for continuing to lead the way in personalized medicine and rare disease care. 👏

SALT LAKE CITY, Utah (Good Things Utah) – Intermountain Health Primary Children’s Hospital and the University of Utah Health Department of Pediatrics are making whole genome sequencing available to…