MI HB4167

Creates a Rare Disease Advisory Council within the department to advise on research, diagnosis, and treatment of rare diseases in Michigan.

Council membership includes the department director, 14 appointed positions (physicians, nurses, epidemiologists, hospital and insurance representatives, researchers, patients, caregivers, and industry representatives), and additional members as the director deems necessary.

Members serve 4-year terms without compensation but receive reimbursement for travel expenses; council must meet at least quarterly and operate under open meetings and freedom of information laws.

Council must research priorities regarding cost-effectiveness and access to treatments, identify best practices from other states, coordinate with other organizations, and serve as advisory body to the legislature, governor, and state agencies on rare disease matters.

Council must develop a publicly accessible webpage on rare disease resources by December 21, 2023, and submit written reports to the legislature every two years beginning in December 2023; all recommendations must be based on medical or scientific evidence.