National Plan to End Parkinson’s

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 (ACPRCS), which includes people living with Parkinson’s, caregivers, health care providers, researchers, advocacy organizations, and representatives from federal agencies. For more information on ACPRCS membership and Council business, see below. 

Advisory Council on Parkinson's Research, Care, and Services (ACPRCS)

The Advisory Council on Parkinson's Research, Care, and Services (ACPRCS) is a Federal advisory committee charged with providing advice to the HHS Secretary on Parkinson's-related issues, including the creation of a national plan. Through its inclusion of both Federal and public members, the ACPRCS helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum. The Council consists of thirteen Federal members and ten non-Federal members, who include people living with Parkinson’s, caregivers, health care providers, researchers, and representatives from advocacy organizations. Non-federal members were selected by the Secretary of Health and Human Services following an open nomination process. 

ACPRCS Roster

ACPRCS Meetings

ACPRCS meetings are open to the public and include presentations and discussions on a variety of topics. A portion of each meeting is reserved for public comment. Information about each meeting, including the minutes, video, and slides, will be posted on this webpage.

The inaugural meeting of the Advisory Council on Parkinson's Research, Care, and Services will be held on Monday, June 29^th from 10AM-4:00PM ET. The meeting will be webcast live on HHS Live Streaming. At this meeting, NIH/HHS will introduce and swear in a slate of Advisory Council members, federal agencies will provide an overview of Parkinson’s programs, and the Advisory Council will strategize on their initial workplan. To submit public comment, please email NationalPDplan@nih.gov and include the phrase “public comment” in the subject line as well as the body of the message. See public comment instructions and guidelines below.

Public Comment Instructions and Guidelines

General Information on Public Comments

Prior to each meeting of the ACPRCS full committee, NIH/HHS issues a Federal Register notice and an announcement on the ACPRCS website inviting members of the community to provide public comment for the Council’s consideration at the meeting. Submissions are accepted in writing via e-mail addressed to NationalPDplan@nih.gov. Please include the phrase “public comment” in the subject line as well as the body of the message, and indicate whether you request the opportunity to deliver comments orally at a ACPRCS Council meeting. Public comments can also be submitted throughout the year on a rolling basis and will be collected and provided to the Council for their consideration at the next ACPRCS full Council meeting. 

At each full Council meeting, a limited number of slots are available for individuals to provide a 2-3 minute summary of their comment orally before the committee either in person or via a virtual platform. Individuals interested in the opportunity for an oral comment may indicate that in their written submission, and if a slot becomes available, they will be notified by Council support staff and provided with instructions. For any given meeting, priority for oral comment slots will be given to those who have not previously provided oral comments in the current calendar year. This will help ensure that as many individuals as possible have an opportunity to share comments. NIH/HHS is not able to provide travel funds for individuals giving public comment.

Additionally, the ACPRCS also periodically solicits public comment through Requests for Information or other methods. Comments received are taken into consideration by the committee in their strategic planning, development of recommendations, and planning of other Parkinson’s-related activities. Due to the volume of comments, the ACPRCS is unable to individually respond to public comments.

Guidelines and Privacy Notice

Guidelines for ACPRCS public comment are designed to encourage respectful and constructive dialogue, to protect the privacy of individuals, and to ensure that public comments are maximally beneficial to the work of the committee. Guidelines are as follows:

• Individuals must be 18 years of age or older to register for and provide public comment to the ACPRCS.
• Comments should be addressed to the ACPRCS as a whole and not to specific Council members nor to guest speakers or other individuals who are not members of the ACPRCS.
• Comments should include the name of the submitter, affiliation if applicable, and full contact information including address, e-mail, and phone number. The contact information will be used by Council support staff to contact the submitter but will be redacted from the record.
• By voluntarily providing comments to the ACPRCS, the commenter is consenting to the use and consideration of these comments by the Council and relevant federal agencies.
• Public comments provided to or prepared on behalf of the ACPRCS become a part of the public record and written comments or videos of the meeting may be posted on the ACPRCS website for public access.
• Information that is private, confidential, copyrighted or proprietary should not be included, other than contact information to enable Council support staff to contact a commenter if necessary.
• Public comments received in writing are prepared by Council support staff for the committee in accordance with the Federal Advisory Committee Act (FACA), the Freedom of Information Act (FOIA), the Privacy Act, and other applicable laws, regulations and policies, including any necessary redaction.
• Attachments are discouraged and will not be provided to the Council except upon request.
• Submissions may include citations or web links to publicly accessible websites and documents. Please use these instead of attachments.
• Brief comments of 1000 words or less are best and most effective. If overly lengthy, comments may be truncated, with the rest available to the Council upon request.
• Duplicate submissions are discouraged; if received, only one example will be provided to the Council.

The following are prohibited in public comments and will either be redacted from public comments or the entire comment will not be accepted if containing the following:

• Vulgar, offensive, obscene, inflammatory, profane, threatening, or abusive language.
• Unlawful or otherwise objectionable statements, personal attacks, accusations against individuals or organizations.
• Discriminatory language (including hate speech) based on race, national origin, age, gender, sexual orientation, religion, or disability.
• Content that infringes on copyrights.
• Personal photos or videos.
• Sensitive personal information such as personal medical or educational records or information pertaining to legal proceedings.
• Detailed personally identifiable information about third parties.
• Solicitations and advertisements.

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 received five million dollars to implement the National Plan to End Parkinson’s Act in FY26. These funds are for implementation and do not include support for research grants. 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 as they did in FY26; 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