MT HB943

Creates a 17-member Montana Rare Disease Advisory Council within the Department of Public Health and Human Services to advise on the needs of individuals with rare diseases

Council membership includes healthcare providers (physician, nurse, pharmacist, geneticist, mental health provider), researchers, patients, caregivers, Medicaid and health plan representatives, and industry stakeholders

Requires the council to hold public hearings, develop policy recommendations for improving patient access to specialists and treatments, publish resources on the DPHHS website, and submit annual reports to the governor and legislature

Appropriates $16,000 from the general fund for the 2025-2027 biennium to cover council costs, with members serving without compensation but receiving travel reimbursement

Effective July 1, 2025, with the initial council meeting required within 90 days and monthly meetings during the first year, then quarterly thereafter