Utah Rare Disease Advisory Council

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…

05/15/2026

Check out the Stakeholder Feature from the latest Utah RDAC quarterly newsletter:

Recursion is a Salt Lake City–based company using AI and scientific innovation to discover and develop new medicines for people living with diseases that often have few or no treatment options, including rare diseases. Around the world, an estimated 300 million people are affected by a rare disease, yet only about 5% of rare diseases currently have an approved treatment, which is why this work matters so deeply to the team at Recursion.

Read the rest of the article at: https://utahrdac.org/stakeholder-feature-recursion/

05/13/2026

The newest edition of the Utah RDAC quarterly newsletter, Rare Matters, is now available on our website: https://utahrdac.org/news/

04/30/2026

04/17/2026

The Utah Rare Disease Advisory Council will be meeting on Monday, April 20th 11:00am-1:00pm at the University of Utah Helix Building. Our meetings are open to the public. You can also join remotely. Contact us on our website for the Zoom link. utahrdac.org

03/30/2026

Meet the RDAC: Jennifer Strohecker, Council Member, CEO Strohecker Health Solutions

Jennifer Strohecker, PharmD, is the founder and CEO of Strohecker Health Solutions (SHS), where she leverages more than 25 years of experience across state, managed care, and healthcare delivery systems. SHS partners with healthcare organizations, state programs, and providers to translate complexity into strategy and ex*****on – strengthening compliance, advancing performance, and achieving measurable, person-centered gains in access, quality, and cost.

Before founding SHS, Dr. Strohecker served as Utah’s State Medicaid Director and Director of Integrated Healthcare for the Department of Health and Human Services. She led major transformation initiatives, including Medicaid’s system modernization, the post-pandemic unwinding process, managed care reform, and policy expansions addressing maternal health, dental care, and social determinants of health.

Earlier in her career, Dr. Strohecker was Senior Pharmacy Director at Molina Healthcare and assistant professor of pharmacy practice, and a clinical pharmacist at Intermountain Health -foundational experiences that continue to ground her people-first operationally focused approached to policy and program design.

Driven by a commitment to operational excellence and measurable impact, Dr. Strohecker balances her leadership with SHS with a deep investment in the healthcare community. In addition to leading SHS, she serves on several nonprofit boards, teaches at the University of Utah College of Pharmacy, and volunteers locally and with the Camotán Clinic in Guatemala.

03/24/2026

Meet the RDAC: Aaron Quinlan
Council Member, Chair of Human Genetics, University of Utah

Aaron is an Endowed Professor and Chair of Human Genetics with a history of innovation in computational genomics. His laboratory develops and applies software and new algorithms to study the origins, patterns, and consequences of mutations in diverse contexts including rare diseases, infertility, and cancer. Their tools are used daily by thousands of researchers worldwide. They innovate by devising genomic, algorithmic, and data science techniques to advance precision medicine. They have created over 50 widely-used, open-source software tools that advance genomic discovery worldwide.