The National Parkinson’s Project

💡 Quick Summary

  • First-ever federal Parkinson’s initiative, established by law in 2024, to coordinate prevention, research, care and cure efforts nationwide.

  • Guided by a federal advisory council of people with PD, caregivers, clinicians, researchers and non-profits.

  • Drives accountability and progress through a national plan, required reporting and policy recommendations.

  • Find out how you can keep the momentum going.

Group outside of the U.S. Capitol Building

The National Parkinson’s Project is the first-ever federal initiative to accelerate and coordinate efforts to prevent, treat and cure Parkinson’s disease (PD) under the National Plan to End Parkinson’s Act.

National Plan to End Parkinson’s Act

The Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkison’s Act was signed into law on July 2, 2024. It is the first federal law dedicated to preventing, diagnosing, treating and curing Parkinson’s and related neurodegenerative disorders.

What does the initiative do?

National Parkinson’s Project and Plan

  • The Department of Health and Human Services must carry out a National Parkinson’s Project to lead federal efforts against Parkinson’s, including prevention strategies, research investments, improved diagnosis, treatments, clinical care and efforts to slow or stop disease progression.

  • Health and Human Services must also create, maintain and update a National Plan focused on prevention, diagnosis, treatment, care, and finding a cure for Parkinson’s along with related neurodegenerative conditions.

Federal Advisory Council

  • The law establishes a council made up of government and non-government members including people with Parkinson’s, clinicians, researchers, caregivers and representatives from non-profit organizations to advise Health and Human Services on Parkinson’s and neurodegenerative disease related issues and help inform the National Plan.

  • This ensures that the national Plan is informed by science and lived experiences to improve the lives of people living with Parkinson’s.

Reporting Requirements

  • The Advisory Council must provide regular reports to the Secretary of Health and Human Services and Congress on federally funded efforts, progress toward goals identified in the National Plan, add recommendations to improve quality of care, reduce financial impacts, and increase research effectiveness.

  • The first report was due on January 2, 2026, but has not yet been completed.

Timeline

  • The law remains in effect through 2035.

  • After 2035, the law’s provisions, including the council, will stop unless Congress acts to continue the effort.

Why it Matters

A national poll found that four in five voters support a clear national strategy to improve prevention, treatment and care of Parkinsons, including adding hundreds of millions in federal research funding. Now, is the time to increase federal investments and government coordination to advance the National Parkinson’s Project.

Having a federal strategy to end Parkinson’s under one initiative will help:

  • Develop new pathways for treatments and cures

  • Improve early diagnosis

  • Address gaps in clinical trial access and care delivery

  • Support better care for Parkinson’s and related neurodegenerative conditions

  • Advance efforts to curb the use of toxic chemicals linked to Parkinson’s

The Council

In April, the Project’s Advisory Council was announced. This announcement came more than three months after the Council was supposed to deliver its first report to Congress; it will be critical for the Advisory Council to quickly deliver results for people with Parkinson’s.

Michael S. Okun headshot

Parkinson’s Foundation National Medical Advisor Michael S. Okun, MD, was appointed to the Council. Dr. Okun has served as our National Medical Director since 2006, and as of 2025, chairs the Foundation’s Clinical Advisory Council. He will help ensure the Plan is guided by scientific evidence and lived experiences, supporting implementation of the National Parkinson’s Project and advancing research towards a cure.

Read our press release to learn more.

What’s Next

The Parkinson’s Foundation is working to ensure that the National Parkinson’s Project is fully implemented. We are urging the Council to:

  1. Estimate funding needed to prevent, diagnose, treat and cure Parkinson’s disease. This should include the cost of research to develop new disease-modifying treatments, study toxic exposures and mitigation, address health professional shortages, caregiving gaps and long-term care needs.

  2. Prioritize quality care. This should include actionable recommendations to improve PD care for people across all stages of the disease.

  3. Set firm deadlines and sustain momentum. Since the Department of Health and Human Services missed the deadline for the first mandatory biannual report, the Foundation is working with partners and Congress to call for the release of the overdue report by January 2, 2027.

Keep the momentum going: write to your member of congress now

Get Involved

The Parkinson’s Foundation is working with federal partners and the PD community to ensure the National Parkinson’s Project achieves its goals. Here is how you can help:

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