summary
Introduced
02/06/2026
02/06/2026
In Committee
02/13/2026
02/13/2026
Crossed Over
Passed
Dead
Introduced Session
104th General Assembly
Bill Summary
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.
AI Summary
This bill, the Neurodegenerative Disease Patient Protection and Progress Act, establishes a comprehensive framework within the Department of Public Health (DPH) to address neurodegenerative diseases like Parkinson's, ALS, and Multiple Sclerosis. It mandates the creation of a Neurodegenerative Disease Advisory Council, composed of legislators, healthcare professionals, patient advocates, and individuals affected by these diseases, to guide the DPH's efforts. A full-time Neurodegenerative Disease Coordinator will be hired to oversee the implementation of the Act, including the development of a State plan to address these conditions, which will include assessments of environmental risk factors and strategies for prevention, diagnosis, care, and research. The bill also establishes a voluntary statewide registry to collect de-identified patient information, with patient consent, to improve understanding, facilitate planning, and support research, while ensuring strict privacy protections. Furthermore, it creates a Neurodegenerative Disease Research Support and Grant Fund to provide grants for research and to support various program costs, including the Coordinator's salary, workforce training, and public awareness campaigns, with a focus on ensuring equity and rural access to care and services. The Act also requires annual reporting on the progress of these initiatives and includes provisions for coordination with federal programs and private partners.
Sponsors (1)
Last Action
Referred to Rules Committee (on 02/13/2026)
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