Bill > HB4654

This bill creates the Rare Disease Advisory Council within the Michigan Department of Health to advise the department and other state agencies on research, diagnosis, and treatment efforts related to rare diseases in the state. The council will be composed of various members, including healthcare professionals, researchers, patient representatives, and industry representatives. The council is tasked with identifying priorities, best practices, and recommendations related to the cost-effectiveness and access to rare disease treatments and services, as well as collecting and disseminating data on rare diseases. The council is required to submit a biennial report to the legislature on its activities, findings, and recommendations.