U.S. launches national plan to tackle Parkinson's disease and related disorders

With support from the U.S. Department of Health and Human Services (HHS) Office of the Assistant Secretary for Health (OASH), the National Institutes of Health (NIH) is leading the implementation of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson's Act (P.L. 118-66), which was signed into law on July 2, 2024. This follows a delegation of authority from the Secretary of the Department of Health and Human Services to the NIH Director.

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 to prevent, diagnose, treat, and cure Parkinson's, ameliorate symptoms, and slow or stop progression. 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-related dementia.

The goals of the act are to coordinate Parkinson's-related research and services across federal agencies; speed the development of safe and effective treatments; improve early diagnosis; facilitate coordination of care and treatment; reduce the impact of Parkinson's on the physical, mental, and social health of individuals living with Parkinson's and their caregivers and families; and increase international coordination.

In anticipation of implementing this act, NIH is seeking nominations for individuals to serve on the Federal Advisory Council on Parkinson's Research, Care, and Services that will provide advice on Parkinson's-related issues, including recommendations for priority actions to be included in the national plan. The council will include two patient advocates, including one individual who is living with young-onset PD; a family caregiver; a healthcare provider; two biomedical researchers with Parkinson's related expertise; a movement disorders specialist who treats people with Parkinson's; a dementia specialist who treats people with Parkinson's; and two representatives from Parkinson's-related nonprofit organizations. Additionally, the council will have representatives from 13 federal agencies that are involved in Parkinson's research, clinical care, or care services. The council will be co-chaired by the director of the NIH's National Institute of Neurological Disorders and Stroke and the associate deputy director for the Office of Science and Medicine for HHS' OASH.