Rare Disease Advocacy in Montana
Rare disease advocacy in Montana is critical to improving access to diagnostics, treatment, and coordinated care. Because key healthcare decisions are made at the state level, strong local advocacy helps ensure better coverage, resources, and outcomes for the rare disease community across Montana.
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State Organization
Currently this state does not have a state organization.
For more information, please reach out at advocacy@rareadvocates.org.
U.S. Congress Scorecard
See how Montana’s Members of Congress are supporting the rare disease community with this Legislative Scorecard.
RARE Disease Advisory Council
An Advisory Council was established in 2025.
See more information on established rare disease advisory councils.
Rare Disease Caucus
Current Bipartisan Rare Disease State Legislative Caucuses.
Don’t see your state? If you would like to be part of the process to start a rare disease state caucus, please reach out at advocacy@rareadvocates.org.
Newborn Screening in Montana
Newborn screening programs vary widely by state, leading to disparate health outcomes. While some states screen for thirty diseases, other states screen for over sixty.
Montana Advocacy Resources
Insurance Commissioner
- James E. Brown
ics@mt.gov
Department of Insurance
Board of Pharmacy Executive Director
- Marcie Bough
dlibsdpha@mt.gov
Health and Human Services
- Medicaid in Montana
- Contact: Rebecca de Camara rdecamara@mt.gov
Department of State Health Services
COVID-19 Resources
State Legislature Calendar
State Legislature Website
Drug Utilization Board or P&T Committee
- DUR Board Website
- Meeting Schedule: Meeting times vary (check website for schedule of meetings).
- Contact: Shannon Sexauer – PharmD, 406-444-5951
- Established DUR Boards and P&T Committees
