Historic Call for Coordinated Action: Coalition Unveils National Plan for Epilepsy in Epilepsy Currents

Published on August 25th, 2026

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Main Facts: A Unified Front for 3.4 Million Americans

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Washington D.C. – August 25th, 2026 – In a landmark collaborative effort poised to reshape the national strategy for epilepsy care and research, a powerful coalition of leading organizations has formally presented a compelling case for a National Plan for Epilepsy. The comprehensive proposal, detailed in a new publication in the esteemed journal Epilepsy Currents, outlines critical priorities designed to address long-standing deficiencies in research funding, public awareness, and access to optimal care for the estimated 3.4 million Americans living with epilepsy.

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The article, titled “A Coordinated National Plan for Epilepsy: From Consensus to Action,” represents a significant milestone in epilepsy advocacy. It is the culmination of extensive collaboration among some of the most influential entities in the epilepsy community, including Epilepsy Alliance America (EAA), CURE Epilepsy, the American Epilepsy Society (AES), Epilepsies Action Network, the Epilepsy Foundation, the National Association of Epilepsy Centers (NAEC), the Rare Epilepsy Network (REN), the International League Against Epilepsy (ILAE), and The Epilepsy Leadership Council.

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Epilepsy Alliance America proudly announced its integral role in this initiative, specifically highlighting the contributions of its distinguished Board members, Amanda Mitchell, MPH, LCCE, and Joyce Bender, whose expertise and dedication were instrumental in the publication’s development. The unified voice presented in Epilepsy Currents underscores a collective urgency to transform the landscape of epilepsy diagnosis, treatment, and support across the United States. The plan calls for a coordinated federal response to a condition that, despite its widespread prevalence, continues to be marred by significant disparities and a societal understanding often lagging behind its medical complexities.

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Chronology: The Road to a National Plan

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The current call for a National Plan for Epilepsy is not an isolated event but rather the latest, and perhaps most impactful, chapter in a long history of advocacy efforts. For decades, individual organizations have worked tirelessly to raise awareness, fund research, and improve patient outcomes. However, the fragmented nature of these initiatives, while effective in their respective spheres, often left broader systemic issues unaddressed.

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The idea of a unified national strategy has gained considerable traction over the past decade, fueled by a growing recognition of epilepsy’s immense public health burden and the persistent challenges faced by patients and their families. Early discussions among advocacy leaders often revolved around the successes seen in national plans for other neurological conditions, such as Alzheimer’s disease, Parkinson’s disease, and stroke, which benefited from dedicated federal strategies that streamlined research, improved data collection, and coordinated public health responses.

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The genesis of “A Coordinated National Plan for Epilepsy: From Consensus to Action” can be traced back several years to informal meetings and subsequent structured convenings facilitated by The Epilepsy Leadership Council. This council, comprising representatives from various epilepsy organizations, recognized the power of a consolidated approach. Through a series of workshops, expert panels, and stakeholder consultations, a core set of "consensus priorities" began to emerge. These priorities, which form the backbone of the Epilepsy Currents publication, were developed through a rigorous process designed to ensure inclusivity, scientific validity, and practical implementability. The goal was to articulate a vision that transcended individual organizational missions, instead focusing on common ground and shared objectives that would benefit the entire epilepsy community.

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The timing of this publication in August 2026 is particularly strategic. It arrives amidst ongoing discussions in Congress regarding healthcare funding and neurological research priorities, offering policymakers a clear, evidence-based roadmap for action. The collaborative nature of the effort, bringing together such a diverse array of organizations, sends an unequivocal message to federal agencies and legislative bodies: the epilepsy community is united and ready to partner in implementing transformative change. This collective momentum aims to capitalize on increasing public and political will to address chronic conditions more effectively, positioning epilepsy for the comprehensive national attention it requires.

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Supporting Data: Unpacking the Gaps

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The urgency behind the call for a National Plan for Epilepsy is rooted in stark realities and profound disparities that affect millions of Americans. Despite its prevalence, epilepsy remains a condition often misunderstood, underfunded, and underserved. The Epilepsy Currents publication meticulously outlines these critical gaps, providing a robust justification for coordinated federal intervention.

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The Burden of Epilepsy: More Than Just Seizures

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Epilepsy is the fourth most common neurological disorder globally, affecting 3.4 million Americans and approximately 50 million people worldwide. It is characterized by recurrent, unprovoked seizures, but its impact extends far beyond the seizure events themselves. Individuals with epilepsy often face a myriad of co-occurring conditions, including depression, anxiety, cognitive impairments, and an increased risk of premature death, particularly from Sudden Unexpected Death in Epilepsy (SUDEP).

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The economic burden of epilepsy is staggering. Direct medical costs, including emergency room visits, hospitalizations, medication, and long-term care, contribute significantly to healthcare expenditures. Indirect costs, such as lost productivity due to unemployment, underemployment, disability, and caregiver burden, add billions to the societal cost. Studies estimate the total annual economic burden of epilepsy in the U.S. to be in the tens of billions of dollars, a figure that underscores the need for preventative and effective management strategies.

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Research Funding Disparities

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One of the most critical gaps identified is the persistent underfunding of epilepsy research relative to its prevalence and burden. Compared to other neurological conditions, epilepsy research consistently receives a disproportionately smaller share of federal funding from agencies like the National Institutes of Health (NIH) and its National Institute of Neurological Disorders and Stroke (NINDS). This disparity hampers progress in several vital areas:

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• Understanding Etiology: While genetic and structural causes are identified in some cases, a significant percentage of epilepsies remain idiopathic, meaning their cause is unknown. Increased funding is crucial to unraveling the complex genetic, environmental, and neurological factors that trigger the condition.

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• Developing Novel Therapies: Despite advancements, approximately one-third of individuals with epilepsy live with drug-resistant epilepsy, meaning their seizures are not controlled by available medications. There is an urgent need for research into new drug targets, advanced surgical techniques, and innovative non-pharmacological interventions.

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• Preventing Epileptogenesis: A major goal is to identify biomarkers and develop interventions that can prevent epilepsy from developing after a brain injury or insult, or to halt its progression in early stages.

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• SUDEP Research: SUDEP remains a devastating and often unaddressed risk. Research into its mechanisms, risk factors, and preventative strategies is severely underfunded, leaving patients and families vulnerable.

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• Social and Behavioral Research: Beyond medical treatments, research is needed to understand and mitigate the psychosocial impacts of epilepsy, including stigma, educational attainment, employment challenges, and mental health comorbidities.

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Awareness Deficits and Stigma

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Despite its prevalence, public awareness and understanding of epilepsy remain critically low, fostering pervasive stigma. Many people still hold outdated or inaccurate beliefs about epilepsy, associating it with mental illness, demonic possession, or contagious disease. This lack of accurate information leads to:

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• Delayed Diagnosis: Misunderstanding of seizure types can lead to delays in seeking medical attention and receiving an accurate diagnosis.

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• Social Isolation: Stigma can cause individuals with epilepsy to conceal their condition, leading to social isolation, discrimination in employment and education, and psychological distress.

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• Inadequate First Aid: Lack of public knowledge about seizure first aid can result in inappropriate or even harmful interventions during a seizure, or a failure to provide necessary assistance.
• Policy Gaps: Low public awareness often translates into a lack of political will to prioritize epilepsy in healthcare policy and funding decisions.

Access Barriers to Optimal Care

Even when diagnosed, access to optimal care is far from universal. Significant disparities exist across the United States:

• Geographic Disparities: Rural and underserved urban areas often lack access to specialized neurological care, including epileptologists and comprehensive epilepsy centers. Patients in these regions may travel hundreds of miles for expert consultation, or simply go without.
• Shortage of Specialists: There is a national shortage of epileptologists and neurologists with expertise in epilepsy, further exacerbating access issues.
• Delayed Referrals: Primary care physicians, while crucial, may not always recognize complex seizure disorders or refer patients to specialists in a timely manner, leading to prolonged uncontrolled seizures.
• Insurance and Financial Barriers: High deductibles, co-pays, and restrictions on medication formularies can create significant financial burdens, forcing patients to make difficult choices about their treatment.
• Transition of Care: Adolescents and young adults transitioning from pediatric to adult care often fall through the cracks, leading to lapses in treatment and management.
• Disparities in Advanced Therapies: Access to advanced diagnostic tools (e.g., video-EEG monitoring) and therapies (e.g., epilepsy surgery, vagus nerve stimulation, responsive neurostimulation, dietary therapies) is not equitable, leaving many eligible patients without potentially life-changing interventions.

These interconnected challenges paint a clear picture of a public health crisis demanding a cohesive, national response. The Epilepsy Currents publication and the proposed National Plan aim to systematically dismantle these barriers and foster an environment where every American with epilepsy can achieve their full potential.

Official Responses: Voices from the Coalition

The unveiling of the National Plan for Epilepsy has been met with resounding support and heartfelt endorsements from the coalition partners, each offering a unique perspective on the significance of this unified effort.

Dr. Eleanor Vance, CEO of Epilepsy Alliance America (EAA), articulated the organization’s pride and commitment. "This publication in Epilepsy Currents is more than just an academic paper; it is a beacon of hope and a strategic blueprint for change," Dr. Vance stated. "Epilepsy Alliance America has long advocated for a holistic approach to epilepsy care, and this National Plan perfectly encapsulates our vision. The collaboration behind this effort is unprecedented, bringing together diverse strengths to address a common cause. We are thrilled to see our board members, Amanda Mitchell and Joyce Bender, recognized for their invaluable contributions, embodying the patient-centered advocacy that EAA champions."

Amanda Mitchell, MPH, LCCE, EAA Board Member and co-author, emphasized the public health implications. "As someone deeply involved in public health and patient education, I’ve seen firsthand the devastating impact of fragmented care and misinformation," Mitchell remarked. "The National Plan for Epilepsy focuses not just on medical interventions, but on improving public health surveillance, promoting evidence-based care guidelines, and empowering individuals and families through better education. It’s about creating a system where prevention, early intervention, and comprehensive support are the norms, not the exceptions."

Joyce Bender, EAA Board Member and passionate advocate, highlighted the human element and the fight against stigma. "For too long, people with epilepsy have faced societal barriers that often feel as debilitating as the seizures themselves," Bender commented. "This plan is a testament to the power of unity, aiming to dismantle the stigma, improve employment opportunities, and ensure that every individual with epilepsy has the chance to live a full and meaningful life. My work on this publication stems from a deep personal conviction that coordinated action is the only way forward."

From the research community, Dr. Sarah Chen, President of CURE Epilepsy, underscored the plan’s potential for scientific breakthroughs. "CURE Epilepsy is dedicated to finding a cure for epilepsy, and this National Plan provides the framework for accelerating that mission," Dr. Chen explained. "By advocating for increased and targeted research funding, we can unlock new understandings of epilepsy’s mechanisms, develop more effective and tolerable treatments, and ultimately move closer to a world free from seizures. This collaboration is vital for galvanizing the scientific community and policymakers alike."

Dr. Mark Thompson, President of the American Epilepsy Society (AES), emphasized the clinical and educational aspects. "The AES is committed to advancing professional knowledge and patient care," Dr. Thompson said. "The National Plan for Epilepsy outlines critical strategies for enhancing physician training, disseminating best practices, and ensuring that all patients, regardless of their location, have access to high-quality, specialized neurological care. This plan is crucial for elevating the standard of epilepsy practice nationwide."

Representatives from other key partners echoed these sentiments. The Epilepsy Foundation lauded the plan’s focus on patient support and advocacy, while the National Association of Epilepsy Centers (NAEC) highlighted the importance of strengthening specialized care networks. The Rare Epilepsy Network (REN) emphasized the specific needs of individuals with rare and complex forms of epilepsy, ensuring their inclusion in a broader national strategy. Even the International League Against Epilepsy (ILAE) offered its global perspective, noting how a robust U.S. national plan could serve as a model for other nations and contribute to global epilepsy initiatives.

While no official government responses have been publicly released at the time of publication, the coalition expressed optimism about engaging with federal agencies, including the NIH, CDC, and the Department of Health and Human Services (HHS), as well as congressional leaders. The detailed, consensus-driven nature of the plan is designed to provide a clear and actionable agenda for policymakers, inviting them to join this crucial national endeavor.

Implications: A Future Transformed

The publication of "A Coordinated National Plan for Epilepsy: From Consensus to Action" in Epilepsy Currents marks a pivotal moment, laying the groundwork for a future where epilepsy is no longer a neglected condition but a national health priority. The implications of implementing such a comprehensive plan are profound and far-reaching, promising transformative improvements across research, healthcare, and societal well-being.

Pillars of a Transformed Future

Should the National Plan for Epilepsy be adopted and fully implemented, its impact would be felt through several interconnected pillars:

1. Accelerated Research and Innovation: A dedicated national plan would likely lead to a significant increase in federal research funding. This would catalyze breakthroughs in understanding epilepsy’s causes, developing novel treatments for drug-resistant epilepsy, identifying effective prevention strategies, and ultimately finding cures. Focus areas would include genetics, neuroimaging, bioengineering, and the crucial field of SUDEP prevention.
2. Enhanced Public Health Surveillance and Data Collection: The plan advocates for improved nationwide data collection and surveillance by agencies like the Centers for Disease Control and Prevention (CDC). Better data would allow for more accurate understanding of epilepsy prevalence, incidence, disparities in care, and the effectiveness of interventions, enabling targeted public health campaigns and resource allocation.
3. Improved Professional Education and Training: A national strategy would support initiatives to increase the number of epilepsy specialists and improve the epilepsy knowledge of general practitioners, emergency responders, and other healthcare professionals. This would lead to earlier diagnosis, more appropriate initial management, and timely referrals to specialized care.
4. Equitable Access to Optimal Care: By addressing geographic and socioeconomic barriers, the plan aims to ensure that every individual with epilepsy has access to the full spectrum of care, from initial diagnosis to advanced therapies like epilepsy surgery and innovative device-based treatments. This includes advocating for policies that remove insurance barriers and support comprehensive epilepsy centers.
5. Effective Public Awareness and Anti-Stigma Campaigns: Sustained national campaigns would work to dispel myths, educate the public about seizure first aid, and foster a more inclusive society for individuals with epilepsy. This would reduce stigma, improve quality of life, and empower patients to live without fear of discrimination.
6. Support for Caregivers and Families: Recognizing the immense burden on caregivers, the plan would integrate support programs, educational resources, and respite services to ensure that families also receive the necessary assistance.
7. Focus on Specific Populations: The plan aims to address the unique challenges faced by vulnerable populations, including children, the elderly, veterans, individuals with intellectual and developmental disabilities, and underserved minority communities, ensuring that interventions are tailored and culturally competent.

Expected Outcomes and Long-Term Impact

The successful implementation of this National Plan is projected to yield substantial benefits:

• Better Patient Outcomes: Reduced seizure frequency, improved seizure control, enhanced cognitive function, and better overall quality of life for millions of Americans living with epilepsy.
• Reduced Morbidity and Mortality: A decrease in epilepsy-related complications, including injuries, mental health issues, and SUDEP.
• Decreased Economic Burden: By improving prevention, early intervention, and effective management, the plan could significantly reduce healthcare costs and increase productivity, leading to billions in savings annually.
• Accelerated Scientific Discovery: A coordinated research agenda with dedicated funding streams would undoubtedly fast-track the discovery of new treatments and, ultimately, a cure.
• A More Inclusive Society: By combating stigma and promoting understanding, the plan will foster an environment where individuals with epilepsy are fully integrated into society, with equal opportunities in education, employment, and social life.

Next Steps and Call to Action

The publication in Epilepsy Currents is not the conclusion but a critical stepping stone. The coalition of organizations behind this plan will now embark on an intensive period of advocacy and engagement. This will involve direct outreach to members of Congress, federal agencies, state health departments, and other stakeholders to educate them on the plan’s priorities and garner support for its legislative and administrative implementation. Public education campaigns will continue to raise awareness and build momentum for change.

The organizations encourage individuals, families, healthcare professionals, and anyone impacted by epilepsy to visit https://www.epilepsy-national-plan.org/consensus-priorities to learn more about the detailed consensus priorities and to join the growing movement. Endorsing organizations, both within and outside the epilepsy community, are vital to demonstrating broad support for this urgent call to action.

The National Plan for Epilepsy represents a collective aspiration to transform the lives of millions. With the unified voice of the epilepsy community echoing through the halls of scientific discourse and policy-making, the prospect of a brighter, healthier future for all those affected by epilepsy now seems closer than ever before.