The United States is implementing a national plan to combat Parkinson’s disease and related disorders

With support from the Office of the Assistant Secretary for Health (OASH) of the U.S. Department of Health and Human Services (HHS), the National Institutes of Health (NIH) is leading the implementation of Dr. Emmanuel Bilirakis and the Honorable Jennifer Wexton’s National Plan for the End Parkinson’s Disease Act (P.L. 118- 66), which entered into force on July 2, 2024. This is a consequence of the transfer of powers from the Secretary of the Department of Health and Human Services to the NIH Director.

The bill establishes the Federal Advisory Council on Parkinson’s Disease Research, Care, and Services and calls for the creation and regular updating of a national plan to prevent, diagnose, treat, and cure Parkinson’s disease, alleviate symptoms, and slow or stop the progression of the disease. In addition to Parkinson’s disease, the national plan will also target other neurodegenerative parkinsonisms, including multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy and Parkinson’s disease-related dementia.

The purpose of the bill is to coordinate Parkinson’s disease research and services across federal agencies; accelerate the development of safe and effective treatments; improve early diagnosis; facilitate the coordination of care and treatment; reduce the impact of Parkinson’s disease on the physical, mental and social health of people with Parkinson’s disease and their carers and families; and increase international coordination.

Pending implementation of this bill, NIH is seeking nominations for individuals to serve on the Federal Advisory Council on Parkinson’s Disease Research, Care, and Services, which will provide advice on issues related to Parkinson’s disease, including recommendations on priority actions to be included in national plan . The board will include two patient advocates, including one with young-onset Parkinson’s disease; family caregiver; health care provider; two biomedical researchers with expertise in Parkinson’s disease; a specialist in movement disorders treating people with Parkinson’s disease; a dementia specialist who treats people with Parkinson’s disease; and two representatives from non-profit Parkinson’s disease organizations. Additionally, the council will include representatives from 13 federal agencies involved in Parkinson’s disease research, clinical care or care services. The council will be co-chaired by the director of the NIH National Institute of Neurological Disorders and Stroke and the deputy director of the HHS Office of Science and Medicine OASH.