The bill H.46 establishes the Rare Disease Advisory Council within the Vermont Department of Health to address the needs of individuals living with rare diseases. The Council aims to provide guidance and recommendations to the public, the General Assembly, and other government agencies regarding the challenges faced by rare disease patients, such as delays in diagnosis, misdiagnosis, and limited access to treatment options. The Council will consist of various members, including individuals living with rare diseases, healthcare professionals, and representatives from relevant organizations, and will collaborate with stakeholders like the National Organization for Rare Disorders.

The Council will have the authority to conduct public hearings, provide testimony on legislation affecting the rare disease community, and develop policy recommendations to improve access to diagnostic services and treatment. Additionally, it will maintain a web page as a resource for individuals with rare diseases and may submit recommendations for legislative action as needed. The bill specifies that the Council will meet quarterly and outlines provisions for member compensation and reimbursement. The act is set to take effect on July 1, 2026.