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Welcome to NAPPA, a steering committee assembled to lead federal PANS and PANDAS legislative efforts. 

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The National Alliance for PANS/PANDAS Action (NAPPA) seeks to obtain increased federal funding for PANS and PANDAS research, care and treatment. Between 2014 and 2024, PANS and PANDAS researchers have received an average of only 1 million dollars annually from the federal government -- an amount woefully inadequate to achieve the much needed breakthroughs in care and treatment for these devastating conditions that cause unbelievable pain and suffering for children and families. â€‹â€‹

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WHY Patients and Families living witH PANS and pANDAS NEED YOUR HELP

Today severely ill youth wait indefinitely for appropriate medical intervention due to the lack of awareness and clinical knowledge about PANS and PANDAS amongst health care providers. Ongoing research continues to reveal the extensive, multi-system nature of these illnesses which may involve symptoms beyond the initially apparent behavioral changes such as enthesitis-related arthritis and other co-morbid conditions like postural orthostatic tachycardia syndrome. Yet an agonizing 25 years after NIH began researching PANDAS, scientists have difficulty obtaining governmental support for even the most basic studies to develop diagnostic tests and identify more effective treatments. It is imperative that we build upon our improved understanding of the clear link to COVID-19 infection and subsequent immunological, neurological and psychiatric changes in vulnerable individuals. Application of resources to study the biological underpinnings of infection-associated chronic conditions and illnesses (IACCIs), including PANS and PANDAS, is critical to alleviate the suffering of these patients. The time is now to provide more resources and use new technologies to understand immune and inflammatory responses which affect the brain and cause terrifying and debilitating symptoms. 

Dedicated to making a difference, Nappa members actively participate in advocacy events, â€‹â€‹conferences, presentations, and serve on boards of different organizations.

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Upcoming Events to be Attended by NAPPA members 2025:

 

  • FDA-NIH Rare Disease Day (February 27-28, 2025 in Bethesda, MD - Postponed)

              

  • NAPPA Capitol Hill Day and TAMF 5K (April 10-12, 2025 in Washington, DC)

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  • Dysautonomia International Annual Conference (July 11-13, 2025 in Raleigh, NC)

 

  • Neuroimmune Foundation 2025 Inflammatory Brain Disorders Conference (May 15-16, 2025 - virtual)
     

  • National Conference of State Legislatures Legislative Summit (August 4-6, 2025 in Boston, MA)

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Board Positions :

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Past Events Attended by NAPPA Members:

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  • Dysautonomia International Annual Conference (2023-2024)

  • House Labor, Health and Human Services Public Witness Day (2019 and 2023)

  • NAPPA Capitol Hill Day and TAMF 5K (2023-2024)

  • National Conference of State Legislatures (NCSL) Legislative Summit  (2022-2024)

  • NIH Rare Disease Day  (2023-2024)

  • STAT Summit (2024)

  • Steven and Alexandra Cohen Foundation Edge of Medicine (2024)

  • The Alex Manfull Fund Symposium (TAMF) (2019-2024) 

  • The Every Life Foundation Community Congress (2024)

OUR PartnerS 

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