Key Takeaways from the Second National Parkinson’s Project Advisory Council Meeting

On August 24, 2026, the Advisory Council on Parkinson's Research, Care and Services (ACPRCS), established under the National Parkinson's Project (NPP), held its second public meeting. The meeting focused on perspectives from nonprofit organizations serving the Parkinson’s disease and related disorders (PDRD) community, development of a federal inventory of PDRD programs, public comment and initial reports from the Council’s research and regulatory and care, services and supports subcommittees.

Kristophe Diaz, Chief Executive Officer of CurePSP, presented alongside leaders from national, state and local PDRD nonprofit organizations, highlighting key priorities for the Council to consider on behalf of people living with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA), including earlier and more accurate diagnosis, strong research infrastructure and expanded access to specialized care.

Ahead of the meeting, CurePSP also submitted a formal response to the National Institute of Neurological Disorders and Stroke (NINDS) Request for Information (RFI) on research, care, services and supports for PDRD. Read CurePSP’s RFI response here.

Key Takeaways

• Earlier and more accurate diagnosis remains a critical need. Presenters and oral public commenters pointed to diagnostic delays and opportunities to improve early recognition of non-motor symptoms, which may present before movement changes and significantly impact quality of life. Discussions also emphasized the need to equip a broader healthcare workforce to recognize and distinguish these conditions, use emerging tools appropriately and connect people to specialized care more quickly — particularly as biomarkers and other diagnostic tools are refined and validated across all Parkinsonian conditions.
• Stronger research and data infrastructure could accelerate progress across diseases. NINDS presented plans for a federal inventory intended to track investments and identify gaps across research, care and services. Newly established NIH research categories for PSP, CBD, MSA and broader neurodegenerative parkinsonisms should make federal investments in these diseases easier to track, helping identify funding gaps and opportunities for future investment. Discussions also highlighted the need to make research data easier to compare and combine across studies, diseases and systems — including through more consistent data collection, stronger long-term studies and enhanced biological samples and brain-banking resources.
• Expanding access to specialized care will require strengthening the broader workforce. Discussions highlighted shortages across the professions supporting people with PDRD, including movement disorder and cognitive specialists, primary care providers, rehabilitation therapists, social workers, physician assistants, general neurologists and other clinicians. These gaps can contribute to longer wait times and limited access to specialized care. Proposed solutions included expanded training, competency-based certifications, and telehealth and shared-care models that extend expertise beyond specialty centers.
• There are opportunities to leverage existing nonprofit and federal infrastructure. Nonprofit presenters highlighted research networks, registries, clinical programs, community services and other resources that could contribute to the National Plan. The Council confirmed that nonprofits and other outside experts can participate in subcommittee discussions as ad hoc experts, providing another pathway for community expertise to inform recommendations.
• The growing burden of Parkinson’s disease is raising broader questions about risk factors and prevention. Presenters emphasized the increasing number of people living with Parkinson’s disease and the resulting impact on individuals, families, the healthcare system and the U.S. economy. Environmental, occupational, genetic and other risk factors were raised throughout the meeting as needing greater attention. While these discussions focused primarily on Parkinson’s disease, they raise important questions for PSP, CBD and MSA. Research on risk factors for these diseases is much less developed compared to Parkinson’s, and better data on who develops these diseases and what factors may increase risk could help identify shared risk factors, important distinctions and possible opportunities for prevention.

Public Comment Highlights

The Council heard oral public comments from people living with Parkinson’s disease and advocates. Speakers raised important issues including delayed recognition of early and non-motor symptoms, timely medication administration in hospitals and residential care facilities, availability of exercise and wellness programs, more efficient and patient-centered clinical trial design and the need for disease-modifying treatments. Collectively, the oral public comments reinforced the urgency of addressing challenges that continue to affect people living with PDRDs and their families.

Next Steps for the PSP, CBD and MSA Community

• The Council’s Research and Regulatory and Care, Services and Supports subcommittees will continue meeting, engaging with the public and developing recommendations. Both are exploring the best way to organize their work, including around common disease courses, while also recognizing that needs differ by diagnosis and stage.
• The Council will begin working with the National Academies of Sciences, Engineering, and Medicine on workshops expected in 2027.
• The next Advisory Council meeting (in-person and virtual options) is scheduled for November 9, 2026, in Washington, D.C. with an expected focus on public-private partnerships. Public comments are accepted on an ongoing basis. For public comments to be considered for the November meeting and request an opportunity to provide your comments verbally, please submit your comments to NIH by October 26 at 5:00 p.m. ET.
• A virtual meeting is scheduled for December 7, 2026.

CurePSP remains committed to working with all partners and the PSP, CBD and MSA community to help ensure the National Plan results in meaningful and measurable progress for people living with these diseases.

You can stay engaged by:

• Following CurePSP advocacy updates
• Sharing your experiences as a person living with PSP, CBD or MSA or as a care partner with the NPP as a public comment by emailing nationalPDplan@nih.gov
• Monitoring future NPP activities, such as Advisory Council meetings, workshops and public engagement opportunities