IL HB5465

Creates the Neurodegenerative Disease Patient Protection and Progress Act, requiring the Department of Public Health to establish a Neurodegenerative Disease Advisory Council with members appointed by legislative leaders and the Governor

Requires the Director of Public Health to designate or hire a full-time Neurodegenerative Disease Coordinator to implement the Act and develop a State plan within 12 months addressing diseases including Parkinson's, ALS, Huntington's, and multiple sclerosis

Establishes a voluntary statewide clinical and population registry to collect de-identified and limited identifying information (with patient consent) to improve understanding of disease burden, facilitate public health planning, and support research

Creates the Neurodegenerative Disease Research Support and Grant Fund to provide grants to public and private nonprofit entities for neurodegenerative disease research

Includes provisions for equity and rural access to specialty care, coordination with federal programs and academic partners, annual reporting requirements, and environmental/occupational exposure risk reduction strategies