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 General Assembly recognizes that a lack of awareness contributes to significant challenges faced by rare disease patients, including delays in diagnosis and limited access to treatment. The Council will provide guidance and recommendations to the public and government agencies, aiming to identify and mitigate barriers to effective care for these individuals.

The Council will consist of various members, including individuals living with rare diseases, healthcare professionals, and representatives from relevant organizations. It will have the authority to conduct public hearings, provide testimony on legislation, and develop policy recommendations to improve services for rare disease patients. The Council is also tasked with maintaining a resource webpage and may submit recommendations for legislative action as needed. The act is set to take effect on July 1, 2026.