Bill > HB4169

This bill establishes a Rare Disease Advisory Council within the Michigan Department of Health to provide guidance and support for rare disease research, diagnosis, and treatment. The council will consist of 12-18 members appointed by the department director, including medical professionals, researchers, patient advocates, and representatives from healthcare and pharmaceutical industries. Members will serve four-year terms and must represent diverse perspectives, such as physicians specializing in rare diseases, nurses, epidemiologists, parents of children with rare diseases, patients with rare diseases, and patient organization representatives. The council's key responsibilities include researching treatment accessibility, identifying best practices, coordinating with other organizations, serving as an advisory body to state government, collecting data on rare diseases, and developing a public website with rare disease resources. By March 31, 2026, and every two years thereafter, the council must submit a written report to the legislature detailing its activities, findings, and recommendations. Members will not receive compensation but will be reimbursed for travel expenses, and all council meetings and documents will be subject to open meetings and freedom of information laws. For the purposes of this bill, a rare disease is defined as a condition affecting fewer than 200,000 individuals in the United States.

Health and Social Services

https://legislature.mi.gov/Bills/Bill?ObjectName=2025-HB-4169