2025 Policy Guide
Welcome to the 2025 Utah Rare Disease Advisory Council (RDAC) Policy Guide. The Guide is a compilation of policy statements about issues of critical importance to Utah’s rare disease patients, their families and caregivers. Those who live with rare diseases may face reduced quality of life due to the burdens of their diseases as well as a lack of autonomy caused by chronic, progressive, degenerative, and/or life-threatening aspects of many rare diseases. Patients, as well as their families and caregivers may face burdens, including a lack of financial and other resources, along with disability resulting from the diseases and their treatments.
The RDAC was established by the Utah State Legislature with a mission to provide an in-depth understanding about rare disease for government officials and policymakers. The goal is to address barriers to resources, proper treatment and care.
The Guide’s policy statements support the mission of the RDAC and provide a roadmap for taking steps that will help Utahns with rare diseases lead full and healthy lives. The Guide is a dynamic document. Policies will be modified or added as appropriate.
Download the Guide
2025 Legislative Report
The 2024-2025 report to the legislature of the Rare Disease Advisory Committee (RDAC) of the state of Utah contains RDAC’s purpose, background, executive summary and accomplishments. It details the actions of the following of RDAC’s workgroups:
- Legislative
- Stakeholders and Communications
- Data and Challenges
The report concludes with recommendations for the State Legislature and the Department of Health and Human Services.
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