Bill > H0046

This bill establishes the Rare Disease Advisory Council within Vermont's Department of Health to address challenges faced by individuals with rare diseases. The Council will be composed of 10 members, including people living with rare diseases, healthcare professionals, government representatives, and experts, appointed by various state officials. The Council's primary responsibilities include conducting public hearings to assess service gaps, providing testimony on legislation affecting rare disease patients, consulting experts to develop policy recommendations, maintaining a public web resource, and submitting legislative recommendations. The bill recognizes that rare disease patients often face significant obstacles such as diagnostic delays, limited treatment options, high medical costs, and restricted access to specialists. The Council aims to strategically identify and address these barriers by collaborating with stakeholders like the National Organization for Rare Disorders. Members will meet quarterly, elect an annual chair, and those not already compensated in their roles will receive per diem compensation for up to four meetings per year. The Council is designed to provide guidance to the public, General Assembly, and government agencies regarding the needs of Vermonters with rare diseases, with the legislation set to take effect on July 1, 2026.

Budget and Finance, Health and Social Services

https://legislature.vermont.gov/bill/status/2026/H.46