What is the National Plan to End Parkinson’s?
On July 2, 2024, President Biden signed the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act into law. This law calls for an integrated national plan to prevent, diagnose, treat, and cure Parkinson’s, ameliorate symptoms, and slow or stop progression. This plan will include not only Parkinson’s Disease but will also encompass all other neurodegenerative Parkinsonisms, such as multiple system atrophy, corticobasal degeneration, progressive supranuclear palsy, and Parkinson’s-related dementia.
This National Plan to End Parkinson’s will be developed with input from the Advisory Council on Parkinson’s Research, Care, and Services, which will include people living with Parkinson’s, caregivers, health care providers, researchers, advocacy organizations, and representatives from federal agencies.
Nominations for the Advisory Council on Parkinson's research, care, and services are now closed. Please check back to see how you may contribute to the National Plan in the future.
Advisory Council on Parkinson's Research, Care, and Services
The Federal Advisory Council on Parkinson’s Research, Care, and Services will provide advice on Parkinson’s-related issues, including recommendations to be included in the National Plan to End Parkinson’s. The Advisory Council on Parkinson’s Research, Care, and Services, will include people living with Parkinson’s or neurodegenerative Parkinsonisms, caregivers, health care providers, researchers, representatives from advocacy organizations, and representatives from federal agencies.
More information on the roles, responsibilities and selection process of members of the Council will be posted soon.
Frequently Asked Questions
Who is implementing the National Parkinson's Plan?
The Secretary of Health and Human Services has delegated authority for implementing the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s Act (P.L. 118-66) to NIH. NINDS will co-lead the Advisory Council with the Office of the Assistant Secretary for Health. The delegation of authority from HHS to NIH can be found in the Federal Register.
Which Federal Agencies are participating in the Advisory Council?
According to the Act, the Advisory Council shall consist of at least 13 Federal members, appointed by the Secretary, who collectively are from various background and perspectives, including at least one member from each of the following: the Centers for Disease Control and Prevention; the Administration on Community Living; the Centers for Medicare & Medicaid Services; the National Institutes of Health; the Agency for Healthcare Research and Quality; the Department of Veterans Affairs; the Food and Drug Administration; the National Science Foundation; the Department of Defense; the Environmental Protection Agency; the Office of Minority Health; the Indian Health Service; the Office of the Surgeon General of the Public Health Service; and other relevant Federal departments and agencies as determined by the Secretary.
How can I volunteer to serve on the Advisory Council for the National Plan?
Nominations for the Advisory Council are now closed, please check back to see how you may contribute to the National Plan in the future.
Can individuals or organizations set up regular meetings to discuss Parkinson’s research or other aspects of implementing the National Plan?
The Advisory Council will be governed by the Federal Advisory Committee Act (FACA), as amended, which created a structured and transparent process for creating, operating, and terminating Federal advisory committees, including requirements for public input. To ensure equitable and transparent processes for all members of the public to provide input, NINDS will not establish regular meetings with individuals or groups to discuss development or implementation of the National Plan to End Parkinson’s. Individuals and groups should utilize opportunities for public input that are available through the Advisory Council on Parkinson’s Research, Care, and Services.
How much money is associated with the National Plan to End Parkinson’s?
NIH has not received any appropriations to implement the National Plan to End Parkinson’s Act. Furthermore, the Act does not authorize future appropriations (i.e., the legislation does not specify any funding levels). Congress may choose to specifically appropriate funds for implementing the National Plan to End Parkinson’s during the annual appropriations process; however, they are not required to do so.
How is this plan integrated with National Alzheimer’s Plan Act and Alzheimer’s Disease funding? How will the National Plan impact dementia funding?
The National Plan to End Parkinson’s is required to include Parkinson’s disease and all neurodegenerative parkinsonisms, including Parkinson’s-related dementia and progressive supranuclear palsy (PSP), both of which are already included in the National Plan to Address Alzheimer’s. The legislation says that the Secretary shall “to the extent practicable, collaborate with other entities to prevent duplication of existing research activities for related disorders”; however, it does not give any additional guidance on how to address the intersection between Parkinson’s and Alzheimer’s and related dementias. The intersection of the National Plans for these diseases will need to be addressed on an ongoing basis by the Advisory Councils for both National Plans and by the relevant federal agencies.
News & Events
Director's Message: National Plan to End Parkinson’s Disease Update: NIH Seeks Nominations for Advisory Council on Parkinson’s Research, Care, and Services