An act relating to the Rare Disease Advisory Council

This bill establishes the Rare Disease Advisory Council within Vermont's Department of Health to provide guidance and recommendations on behalf of individuals living with rare diseases in the state. The council will consist of 13 members representing diverse perspectives, including people with rare diseases, healthcare providers, researchers, insurance companies, and industry representatives, with appointments made by various state officials and organizations. Its primary duties include holding public hearings to assess community needs, reviewing legislation that affects rare disease patients, making policy recommendations to improve healthcare access and coverage, evaluating newborn screening programs, and publishing educational resources for providers and the public. The council will meet regularly, submit annual reports to legislative committees, and its members will receive per diem compensation and expense reimbursement for their service.