HB5465 - 104th General Assembly (2025-2026)

DPH-NEURO DISEASE PROGRESS ACT
Last Action
3/04/2026 - House: Assigned to Appropriations-Health and Human Services Committee
Hearings
Appropriations-Health and Human Services Committee Hearing Mar 20 2026 8:00AM Capitol Building 114 and Virtual Room 1 Springfield, IL
Statutes Amended In Order of Appearance
New Act  
30 ILCS 105/5.1038 new  
Synopsis As Introduced
Creates the Neurodegenerative Disease Patient Protection and Progress Act. Requires the Department of Public Health to convene a Neurodegenerative Disease Advisory Council within the Department. Sets forth provisions concerning the membership of the Advisory Council, terms of the members, meetings of the Advisory Council, and administrative support, and duties of the Advisory Council Provides that the Director of Public Health shall designate or hire a full-time Neurodegenerative Disease Coordinator within the Department to implement and administer the Act. Requires the Coordinator, acting through and under the supervision of the Director, and with input from the Advisory Council, to develop and publish a State plan to address neurodegenerative diseases. Sets forth required components of the Plan. Establishes a voluntary statewide clinical and population registry to collect de-identified information and, with the patient's informed consent, limited identifying information, to (i) improve understanding of burden imposed by neurodegenerative diseases, natural history, and outcomes, (ii) facilitate public health planning and service delivery, and (iii) support research consistent with applicable privacy protections. Establishes the Neurodegenerative Disease Research Support And Grant Fund to make grants to public or private not-for-profit entities for the purpose of conducting neurodegenerative disease research. Sets forth provisions concerning equity and rural access; coordination with federal programs, academic centers, and private partners; reporting; limitations; and rulemaking. Amends the State Finance Act to make a conforming change. Effective immediately.
Actions
DateChamberAction
2/06/2026HouseFiled with the Clerk by Rep. Kam Buckner
2/13/2026HouseFirst Reading
2/13/2026HouseReferred to Rules Committee
3/04/2026HouseAssigned to Appropriations-Health and Human Services Committee
3/12/2026HouseAdded Co-Sponsor Rep. Michael Crawford