MI HB4169

Creates a Rare Disease Advisory Council within the Department of Health consisting of the director plus 12-18 appointed members, including physicians, nurses, epidemiologists, hospital representatives, insurers, pharmaceutical industry representatives, researchers, patients with rare diseases, and patient advocates

Defines "rare disease" as a disease affecting fewer than 200,000 individuals in the United States

Requires the council to meet at least quarterly, research treatment access and cost-effectiveness issues, identify best practices from other states, and coordinate with other rare disease advisory bodies

Mandates the department develop a publicly accessible webpage on rare disease resources by March 31, 2026, including information about inequities experienced by individuals with rare diseases

Requires the council to submit a written report to the legislature on its activities, findings, and recommendations by March 31, 2026, and biennially thereafter