Bill > H0046

This bill establishes the Rare Disease Advisory Council within the Department of Health to advise the public, the General Assembly, and other government agencies on the needs of individuals with rare diseases in Vermont, recognizing that a lack of awareness creates significant obstacles for patients, including delayed diagnoses and limited access to specialists. The Council will be composed of various members, including individuals with rare diseases, their caregivers, healthcare professionals such as physicians, nurses, pharmacists, and geneticists, as well as representatives from relevant state departments and commissions, with members serving five-year terms. The Council's duties include holding public hearings to assess needs, providing input on legislation and rules affecting the rare disease community, and developing policy recommendations to improve screening, diagnosis, and treatment access, with the Department of Health providing administrative and technical assistance. Additionally, the bill mandates the Department of Health to collaborate on developing resources and best practices for primary care providers and patients regarding "long COVID," which is defined as postacute sequelae of SARS-CoV-2 infection, and to recommend long-term disability support strategies for those experiencing it, with these provisions taking effect on July 1, 2026.