Bill > HB4167

This bill creates a Rare Disease Advisory Council within the Department of Health to advise the department and other state agencies on research, diagnosis, and treatment efforts related to rare diseases in Michigan. The council will consist of various members, including physicians, nurses, epidemiologists, hospital representatives, insurance providers, and individuals with rare diseases or representing rare disease organizations. The council is tasked with researching and making recommendations on issues related to the cost-effectiveness and access to rare disease treatments, identifying best practices from other states, coordinating with other rare disease organizations, and providing information and advice to the legislature, governor, and department. The bill also requires the council to develop a publicly accessible webpage on rare disease resources and investigate rare diseases that predominantly affect geographically disadvantaged communities.

Health and Social Services

http://legislature.mi.gov/doc.aspx?2023-HB-4167