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 hospitals and health insurers, individuals with rare diseases, and parents or guardians of affected children. The council is required to meet quarterly, conduct its business in compliance with the Open Meetings Act, and operate transparently under 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 the governor. By March 31, 2026, the council must assist in creating a publicly accessible webpage on rare disease resources and submit biennial reports to the legislature detailing its activities and findings. The bill emphasizes that all recommendations must be based on medical or scientific evidence.

Statutes affected:
House Introduced Bill: 333.1101, 333.25211