The bill amends the Public Health Code to establish a Rare Disease Advisory Council within the Michigan Department of Health. The council is tasked with advising the department and other state agencies on matters related to research, diagnosis, and treatment of rare diseases. It will consist of a director and between 12 to 18 additional members appointed by the director, including healthcare professionals, representatives from health organizations, and individuals affected by rare diseases. The council is required to meet at least quarterly, conduct its business in compliance with the Open Meetings Act, and is subject to the Freedom of Information Act.

Additionally, the council is empowered to apply for grants, hold public hearings, and consult with experts to develop recommendations on improving access to treatments and services for individuals with rare diseases. It will also research best practices from other states, coordinate with various organizations, and provide advisory support to the legislature and governor. The council is mandated to submit a report on its activities and findings to the legislature every two years, starting in 2026, and must base its recommendations on medical or scientific evidence. The bill will take effect 90 days after being enacted into law.

Statutes affected:
House Introduced Bill: 333.1101, 333.25211