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 is, our role as an advisory council, and how we can serve as a resource to patients, families, healthcare providers, legislators, and other partners across the state.
As part of these efforts, members of the Utah RDAC recently participated in a recognition luncheon on June 15, 2026, honoring Representative Katy Hall and Senator John Johnson for their leadership in sponsoring and passing SB 319 during the 2026 Utah Legislative Session. SB 319 helps improve access to care for Utah patients by increasing transparency in insurance practices and establishing clearer requirements for the timely review of health insurance coverage decisions. These improvements are especially meaningful for individuals living with rare diseases, who often face delays and barriers in accessing medically necessary treatments.
The workgroup is also pleased that the Utah RDAC continues to have a voice in broader healthcare policy discussions through representation by Council Member Dr. David Viskochil on the H.R. 1 Community Partner Engagement Group.
The key activity of this group is to ensure that Medicaid recipients are duly informed of changes to Medicaid coverage anticipated for January 1, 2027 as part of implementation of H.R. 1. The new rules apply to Adult Expansion Medicaid and Targeted Adult Medicaid (TAM). This group has a focused approach to making people aware of the changes that have been laid out in H.R. 1. Those receiving Medicaid benefits must show that they are doing one or combination of four items for 80 hours during each month:
- Working a job
- Volunteering or community service
- Going to school at least half-time, and/or
- Earning an income of at least $580/month.
In addition to legislative engagement, the workgroup is expanding outreach throughout Utah by participating in community events and connecting with organizations that serve individuals and families affected by rare diseases. Upcoming outreach includes participation in Canyon Rim Cares on July 18, 2026, providing another opportunity to share information about the Utah RDAC and connect with community members.
We also continue to increase awareness through our social media channels by sharing updates, educational resources, advocacy efforts, and opportunities for engagement. We encourage everyone to help amplify our message by following @UtahRDAC on LinkedIn, Facebook, and Instagram, and by sharing our content within your own networks.
Looking ahead, Utah RDAC Chair Gina Szajnuk and Council Member Ava Szajnuk will represent Utah at the National Rare Disease Advisory Council (RDAC) Stakeholder Meeting in October 2026. They will also attend the National Organization for Rare Disorders (NORD) Breakthrough Summit, providing an important opportunity to collaborate with rare disease leaders from across the country, share Utah’s progress, learn about emerging best practices, and bring valuable insights back to strengthen our work on behalf of Utah’s rare disease community.
Sylvia Lam