With the support of the Office of the Assistant Secretary for Health (OASH) of the US Department of Health and Human Services, the National Institutes of Health (NIH) is leading the implementation of the National Plan of Dr. Emmanuel Bilirakis and the Honorable Jennifer Wexton Ending Parkinson’s Act (PL 118-66), which was signed into law on July 2, 2024. This follows an authorization from the Secretary of the Department of Health and Human Services to the Director of NIH.
The Act establishes a Federal Advisory Council on Parkinson’s Research, Care, and Services and calls for the creation and regular updating of a national plan for the prevention, diagnosis, treatment, and cure of Parkinson’s disease, improvement of symptoms, and the slowing or stopping of the development. In addition to Parkinson’s disease, the national plan will target other neurodegenerative parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson-related dementia.
The goals of the act are to coordinate research and services related to Parkinson’s disease across federal agencies. accelerate the development of safe and effective treatments; improve early diagnosis; facilitate coordination of care and treatment; reduce the impact of Parkinson’s disease on the physical, mental and social health of people living with Parkinson’s and their carers and families · and increasing international coordination.
Pending implementation of this act, NIH is seeking nominations for individuals to serve on the Federal Advisory Council on Parkinson’s Research, Care, and Services to provide advice on issues related to Parkinson’s disease, including recommendations for action priority to be included in the national plan. The council will include two patient advocates, including a person living with PD at a young age. family caregiver; healthcare provider; two biomedical researchers with Parkinson’s expertise; movement disorder specialist who treats people with Parkinson’s disease. dementia specialist who treats people with Parkinson’s disease. and two representatives from non-profit organizations related to Parkinson’s disease. In addition, the council will have representatives from 13 federal agencies involved in Parkinson’s research, clinical care or care services. The board will be co-chaired by the director of NIH’s National Institute of Neurological Disorders and Stroke and the associate deputy director for HHS’s Office of Science and Medicine for OASH.
