Federal Update: Advancing Research and Recognition for PANS/PANDAS
ASPIRE does not lead federal legislative efforts, but we actively support federal initiatives that advance research, federal recognition, and improved coordination of care for PANS/PANDAS and related infection-associated neuropsychiatric conditions.
CLA/NAPPA
The Center for Lyme Action (CLA) and the National Alliance for PANS/PANDAS Action (NAPPA) have launched a national collaboration focused on Lyme disease, Bartonella, and PANS/PANDAS. This initiative seeks federal recognition, increased research funding, and improved care across medical and mental health systems.
CLA and NAPPA are bringing together researchers, clinicians, and policymakers to address how infections can trigger significant neurological and psychiatric symptoms. Their goal is to ensure patients receive appropriate recognition and care across disciplines. A white paper on infection-associated neuropsychiatric symptoms is in development to support scientific understanding and cross-agency collaboration. This effort builds on CLA’s impact in securing over $500 million in federal funding and leveraging national advocacy networks.
Families and advocates interested in supporting this federal research initiative can learn more or get involved through the Center for Lyme Action and NAPPA
Sign up for updates from CLA.
Federal Legislative Milestone for PANS/PANDAS Research
A significant milestone was achieved with the formal inclusion of PANS/PANDAS in the Peer-Reviewed Medical Research Program (PRMRP) as part of the FY2026 Omnibus bill, now signed into law. This provides meaningful federal recognition and establishes a clear pathway for federally funded research.
PRMRP is funded by the U.S. Department of Defense and operates within the Congressionally Directed Medical Research Programs (CDMRP). For FY2026, approximately $370 million is allocated to PRMRP. Each year, Congress determines which medical conditions are eligible for funding. Inclusion is required for researchers to apply.
With PANS/PANDAS now eligible for research funding, investigators can apply for Department of Defense grants to study disease mechanisms, diagnostics, treatments, and outcomes affecting Service Members, Veterans, military families, and the broader population. This establishes a new, ongoing federal research pathway for PANS/PANDAS.
Learn more about PRMRP.
Collaboration and ASPIRE’s Role
Federal progress reflects collaboration among multiple stakeholder organizations. Several PANS-focused nonprofits have participated in PRMRP planning discussions to ensure patient and family experiences are considered in research priorities.
ASPIRE’s federal legislative focus remains on supporting research-driven initiatives, sharing accurate information, and helping families understand how federal policy and funding decisions affect access to care and future treatment options.
Return to ASPIRE Legislative Resources
Gabriella True
