House advances bill to create Vermont Rare Disease Advisory Council

The Vermont House on Tuesday advanced H.46, an act to establish a Rare Disease Advisory Council within the Department of Health to advise state decisionmakers on barriers facing people with rare diseases.

The bill would set council membership to include two individuals with a rare disease, a parent or guardian of someone with a rare disease, department designees, a representative of the Health Equity Advisory Commission, clinicians and researchers, and others. The council’s duties would include convening public hearings, producing a needs assessment, advising on newborn screening recommendations, and supporting access to diagnostics and specialist care. The House Human Services Committee reported the bill with a 10–1–0 vote and the Appropriations Committee reported no additional appropriation needed, noting a nominal fiscal impact estimated at about $5,000 annually for per diem and related expenses.

Representative Garifano (member from Essex), speaking for the Human Services Committee, said the council could affect about 60,000 Vermonters and help address delays in diagnosis, limited treatment options and high out-of-pocket costs. Representative Bloomley (member from Burlington) spoke for Appropriations, noting the Department of Health could absorb anticipated costs within its proposed FY26 budget.

The House adopted the human services committee amendment by voice vote and then ordered third reading by voice vote. The bill, if enacted as written in the House calendar, would take effect on July 1, 2026.

The House hearing record cited testimony from legislative counsel, Department of Health officials, patient advocates and clinicians; the Human Services Committee recommended passage.