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 these patients, including delays in diagnosis and limited access to treatment. 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 to identify and address barriers to care.

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. 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 is set to take effect on July 1, 2026.