Establish the Montana rare disease advisory council

Montana rare disease council begins work

Beginning July 1, 2025, Montana's health department houses a Rare Disease Advisory Council. The governor appoints 17 members, including patients, a caregiver, clinicians, researchers, a health plan, industry, and state agencies. The governor names an initial presiding officer within 30 days for a 3-year term; other terms last up to 4 years and may be staggered. The council meets within 90 days, monthly in year one, and at least quarterly after. It holds public hearings, takes public comment, and posts notices, minutes, and a list of rare-disease resources on the DPHHS website. It reports to the governor and legislature within one year and every year after, and may seek grants and donations. The law provides $16,000 from the general fund for the two-year budget starting July 1, 2025 to cover council costs, and the legislature intends this to be part of the base.