VT H0046

Establishes a Rare Disease Advisory Council within the Vermont Department of Health to address the needs of individuals living with rare diseases, effective July 1, 2026

Council membership includes 10 members: two individuals with rare diseases (one an older Vermonter), a parent/guardian of someone with a rare disease, Commissioners of Health and Disabilities/Aging, a Health Equity Advisory Commission representative, an academic researcher, a physician, a nurse, a pharmacist, and a geneticist/genetic counselor

Council duties include convening public hearings, conducting needs assessments, providing testimony on relevant legislation, consulting with experts to develop policy recommendations, and recommending conditions for the Newborn Screening Program

Council meets quarterly with an annually elected Chair, receives administrative support from the Department of Health, and must maintain a public web page with meeting notices, minutes, and reports

Members not otherwise compensated receive per diem and expense reimbursement under 32 V.S.A. § 1010 for up to four meetings annually