Rare Disease Advisory Council

Established by the 2025 Legislature (HB 943), the Rare Disease Advisory Council (RDAC) will provide guidance, education, and recommendations to the public, legislators, and other government agencies on the needs of individuals with rare diseases in Montana.

Why It Matters

A "rare disease" is defined as any condition affecting fewer than 200,000 people in the U.S. While individual patient counts for a single disease may be small, the collective impact is vast, with 30 million Americans—roughly 1 in 10—living with a rare condition. More than half of these patients are children, and approximately 95% of all rare diseases currently lack an U.S. Food and Drug Administration-approved treatment.

Overcoming Obstacles

Montana families facing rare diseases often navigate a "diagnostic odyssey," characterized by years of delays, a lack of specialized providers, and limited access to affordable medication. These hurdles create significant physical, emotional, and financial burdens.

The RDAC is committed to addressing these challenges by ensuring the voices of Montanans are heard.

RDAC Overview

This 17-member, Governor-appointed council represents Montana’s diverse geography and population. View the full list of required board seats in the bill text.

Kick-off Meeting

The RDAC will host a kick-off meeting on Wednesday, Jan. 28 from 9 am to noon. The meeting information, including the agenda and Zoom link, will be posted closer to the meeting on e-calendar.

The RDAC will perform the following duties to support Montanans impacted by rare diseases:

  • Survey Local Needs: Hold public hearings and gather comments from patients, caregivers, and health care providers to understand the challenges they face.
  • Develop Policy Recommendations: Consult with experts to improve patient access to specialists, affordable and comprehensive health care coverage, diagnostics, and timely treatment.
  • Provide Public Resources: Maintain a section on the Department of Public Health and Human Services (DPHHS) website featuring:
    • A list of accessible resources for rare disease research, diagnosis, and education.
    • Meeting notices, minutes, and portals for public comment.
  • Collaborate and Research: Identify gaps in current research and partner with stakeholders and advisory councils in other states to share findings.
  • Educate Health Care Providers: Create and distribute resources to help doctors better recognize and treat rare diseases.

The RDAC will submit an annual report to the Governor, the legislature, and the Children, Families, Health, and Human Services Interim Committee describing the council’s activities and progress, its recommendations to the Governor and legislature on ways to address the needs of individuals living with rare diseases, and the status of the council’s funding.

Current Members of the RDAC include:

  • Brett Baker, Big Sky – Biopharmaceutical Industry Representative
  • Jennifer Banna, Missoula – Representative of Rare Disease Patient Organization in Montana
  • Kelsey Bell, Helena – Montana Medicaid Program Representative
  • Dr. Marshall Bloom, Hamilton – Rare Disease Research Community Representative
  • Siera Boyd, Billings – Pharmacist with Experience Dispensing Drugs Used to Treat Rare Diseases
  • Joe Cross, Columbus – Individual with a Rare Disease
  • Deborah Gibson, Helena – Montana Public Health Laboratory Representative
  • Jaclyn Haven, Helena – Hospital Administrator or Designee from Hospital that Provides Care for People with Rare Diseases
  • Erin Hoch, Kalispell – Caregiver of an individual with a rare disease
  • Ellen Job, Helena – Geneticist or Genetic Counselor
  • Michele McKinnie, Bozeman – Mental Health Provider with Experience Treating Rare Disease Patients
  • Caitlyn Patera, Helena – RN or APRN Experienced in Treating Rare Diseases
  • Melanie Reynolds, Helena – Individual with a Rare Disease
  • Patrick Secor, Bozeman – Representative of Montana Academic Research Institution that Receives Grant Funding for Rare Disease Research
  • Elizabeth Wood, Billings – Physician with Experience Treating Rare Diseases
  • Department of Labor and Industry Representative, TBD
  • Health Plan Company Representative, TBD