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Alzheimer’s, AUTISM, Parkinson’s, AND ALS all have National Plans.
Epilepsy
DOES NOT.
LESS THAN 0.5%
OF NIH FUNDING GOES TO EPILEPSY.
What is a
national plan?
Passed by Congress and signed into law by the President, A NATIONAL PLAN IS A BILL THAT LEADS TO A FEDERAL INVESTMENT IN EPILEPSY — providing TRANSFORMATIVE resources FOR EVERYONE LIVING WITH, AFFECTED BY, OR WORKING WITH EPILEPSY.
Why do we need a
national plan?
To reduce epilepsy-related mortality from all causes
To improve the detection, prevention, diagnosis, and treatment of the epilepsies and co-existing conditions
To enhance public awareness and engagement
To expand national surveillance (data collection) to capture the magnitude and diversity of the epilepsies
To decrease socioeconomic, racial, geographic, and other disparities in care
To increase the breadth and depth of epilepsy research
WHY DO YOU NEED A NATIONAL PLAN?
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FOR PEOPLE LIVING WITH EPILEPSY AND CAREGIVERSProviding earlier diagnosis, better treatments, improved management, and better outcomes benefits all patients, including those in underserved communities. Expanding access to specialized care and precision interventions enhances treatment through improved diagnostic tools and tests. Accelerating early diagnosis helps people make better-informed decisions about treatment, care, and future planning. Delivering personalized care addresses the whole person, meeting medical, physical, emotional, and social needs. Increasing awareness and offering tools can prevent SUDEP and other causes of mortality, morbidity, and disability. Offering more support, resources, training, and aid eases the emotional, physical, and financial burden on caregivers. Creating programs, respite services, and counseling reduces caregiver stress and burnout. Raising awareness and publicly recognizing the burden of the epilepsies fosters greater understanding and acknowledgment.
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FOR RESEARCHERS & CLINICIANSIncreasing federal funding helps understand the disease, develop treatments, seek cures, improve interventions, and study the burden on individuals, families, and healthcare systems. Expanding training improves the quality and speed of diagnosis, treatment, and communication. Enhancing surveillance accelerates understanding of who the epilepsies affect, as well as how and when they are affected, enabling more targeted interventions. Updating tools, resources, guidelines, and protocols improves clinical care and standardizes practices. Strengthening collaboration across providers, institutions, and regions enhances the continuity and quality of care. Boosting federal investment stimulates private investment and spurs public-private partnerships. Facilitating collaboration between government, universities, private companies, and nonprofits speeds up progress and reduces duplication of efforts. Promoting data sharing amplifies learnings and advances research. Encouraging investment in early detection, drug development, and innovative caregiving models fosters new breakthroughs and solutions.
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FOR THE ECONOMYEarly diagnosis and better management can prevent or reduce hospitalizations, ER visits, and unnecessary diagnostics and treatments, lowering the long-term economic burden. Supporting caregivers eases their burden and can help improve workforce productivity for individuals who might otherwise leave their jobs to care for loved ones. Growth in biotech, healthcare, and technology spurs job creation and economic opportunities. Managing conditions more effectively reduces Medicare and Medicaid spending and lowers public costs. Understanding the economic, physical, and mental health burdens on individuals, families, communities, systems, and the country ultimately decreases costs associated with this chronic, complex, life-long disorder.
How wILL WE get a
national plan?
ALL OF US – PEOPLE LIVING WITH EPILEPSY, CAREGIVERS, CLINICIANS, RESEARCHERS, AND ADVOCATES – WORKING TOGETHER TOWARD A BETTER FUTURE FOR THE MILLIONS OF PEOPLE LIVING WITH EPILEPSY.
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