A Landmark Publication Paves the Way for National Epilepsy Strategy: Uniting for 3.4 Million Americans

FOR IMMEDIATE RELEASE

Washington D.C. – August 25th, 2026 – The Epilepsy Alliance America (EAA) today announced the publication of a pivotal article in Epilepsy Currents, a leading peer-reviewed journal in the field of epileptology. Titled "Forging a United Front: Consensus Priorities for a National Plan for Epilepsy," the article represents a landmark collaboration among key advocacy, research, and clinical organizations, laying bare the urgent need for a coordinated national strategy to improve outcomes for the 3.4 million Americans living with epilepsy. This significant publication underscores a growing momentum for systemic change, highlighting critical gaps in research funding, public awareness, and access to optimal care that continue to challenge patients and their families nationwide.

The comprehensive paper, co-authored by a consortium of the nation’s foremost epilepsy organizations, outlines a compelling case for a holistic, federally supported National Plan for Epilepsy. It details the profound societal impact of the condition and articulates a clear set of consensus priorities designed to drive progress across multiple fronts, from accelerating scientific discovery to ensuring equitable access to specialized medical services. The initiative signifies a powerful alignment of efforts, bringing together diverse stakeholders under a shared vision of a future where epilepsy is better understood, more effectively treated, and ultimately, cured.

Table of Contents

Main Facts: Unveiling a Blueprint for Transformative Change

A Critical Call in Epilepsy Currents

The newly published article in Epilepsy Currents, a journal renowned for its concise reviews and updates on significant advances in epilepsy research and clinical practice, serves as a powerful call to action. It consolidates years of advocacy and expert deliberation into a singular, authoritative statement on the necessity of a national strategy. The authors meticulously dissect the multifaceted challenges faced by the epilepsy community, providing a robust evidence base for their recommendations. This publication is not merely an academic exercise; it is a strategic document intended to inform policymakers, healthcare providers, researchers, and the public about the urgent imperative for a unified approach to epilepsy care and research.

The paper argues that despite significant advancements in understanding and treating epilepsy, the fragmented nature of current efforts limits their collective impact. A National Plan, as envisioned by the collaborating organizations, would provide a framework for integrating research agendas, standardizing care pathways, enhancing public education, and streamlining resource allocation. It posits that such a plan is not only essential for addressing current deficiencies but also for fostering innovation and accelerating the pace towards improved seizure control, better quality of life, and eventual cures. The choice of Epilepsy Currents for this publication ensures maximum visibility and engagement within the scientific and medical communities, setting the stage for broader policy discussions.

The Unmet Needs of 3.4 Million Americans

At the heart of the call for a National Plan lies the sobering reality faced by 3.4 million Americans, including approximately 470,000 children, who live with epilepsy. This chronic neurological disorder, characterized by recurrent, unprovoked seizures, profoundly impacts every aspect of an individual’s life, from their physical health and cognitive function to their emotional well-being, social interactions, and economic stability. Yet, despite its widespread prevalence—comparable to that of Parkinson’s disease and multiple sclerosis combined—epilepsy often receives disproportionately less attention and funding relative to its burden.

The article explicitly identifies significant gaps that a national plan must address:

Research Funding: Insufficient investment hinders discovery into underlying causes, novel treatments, predictive biomarkers, and prevention strategies.

Awareness and Education: Widespread public misconceptions, stigma, and lack of basic seizure first aid knowledge perpetuate misunderstanding and can delay appropriate intervention.

Access to Optimal Care: Geographic disparities, shortages of specialized epileptologists, lack of access to comprehensive epilepsy centers, and economic barriers prevent many from receiving timely diagnosis and advanced treatment options.

These critical deficiencies collectively contribute to poorer health outcomes, increased healthcare costs, and diminished quality of life for millions. The Epilepsy Alliance America, as a leading voice in patient advocacy, has long championed the need for systemic solutions, and this publication marks a crucial step in translating those needs into actionable policy recommendations.

The Road to Consensus: A Chronology of Collaborative Advocacy

From Disparate Efforts to Unified Vision

The journey toward advocating for a National Plan for Epilepsy has been a multi-year endeavor, characterized by the gradual convergence of individual organizational efforts into a powerful, unified front. For decades, various epilepsy advocacy groups, research foundations, and professional societies have worked tirelessly within their respective mandates to address the challenges of epilepsy. While each organization made valuable contributions, the realization grew that a more cohesive, integrated approach was essential to achieve truly transformative change.

The concept of a "National Plan" began to crystallize through a series of informal discussions, workshops, and consensus-building meetings initiated several years prior to this publication. These early convenings brought together leaders from across the epilepsy landscape, fostering an environment for sharing perspectives, identifying common ground, and prioritizing collective goals. The recognition that no single entity could tackle the enormity of the problem alone spurred the formation of a powerful, inter-organizational collaborative. This collaborative understood that a united voice would resonate more powerfully with policymakers and the public than fragmented appeals. The development of the "Consensus Priorities" document, which underpins the Epilepsy Currents article, was the culmination of these intensive efforts, reflecting a meticulously negotiated and widely endorsed set of strategic imperatives.

The Collaborative Force Behind the Publication

The article itself is a testament to an unprecedented level of collaboration within the epilepsy community. The Epilepsy Alliance America is proud to be part of this collective effort, working alongside a distinguished group of partners, each bringing unique expertise and a shared commitment to improving the lives of those affected by epilepsy. These foundational partners include:

CURE Epilepsy: A leading non-profit dedicated to funding research for a cure.

American Epilepsy Society (AES): The principal professional society for physicians and scientists specializing in epilepsy.

Epilepsies Action Network: An advocacy group focused on empowering individuals and families.

Epilepsy Foundation: A national organization focused on advocacy, education, and services.

National Association of Epilepsy Centers (NAEC): Represents specialized medical centers offering comprehensive epilepsy care.
Rare Epilepsy Network (REN): Dedicated to addressing the unique challenges of rare forms of epilepsy.
International League Against Epilepsy (ILAE): The global scientific and medical organization promoting research and education.
The Epilepsy Leadership Council: A forum for leaders of various epilepsy organizations to strategize and coordinate efforts.

This diverse consortium represents the full spectrum of the epilepsy community, from cutting-edge research to direct patient support. Their collective endorsement of the National Plan’s priorities signifies a rare and powerful unity, signaling to legislators and public health officials that the time for decisive action is now. The collaboration extended beyond these core partners to include a broader network of endorsing organizations, both within and outside the immediate epilepsy community, further amplifying the call for a coordinated national strategy. This broad support highlights the cross-sectoral recognition of epilepsy as a significant public health challenge requiring a comprehensive governmental response.

The Compelling Evidence: Supporting Data for a National Imperative

The Human and Economic Burden of Epilepsy

The statistics underpinning the call for a National Plan are stark. Epilepsy is the fourth most common neurological disorder globally, affecting approximately 65 million people worldwide. In the United States, the annual incidence is estimated at 150,000 new cases, with a prevalence exceeding 3.4 million. Beyond these numbers, the personal toll is immense. Individuals with epilepsy often face unpredictable seizures, which can lead to injuries, cognitive difficulties, and a constant fear of the next event. They also experience higher rates of anxiety, depression, and other mental health challenges, often due to the chronic nature of their condition and the societal stigma associated with it.

The economic burden of epilepsy is equally substantial. Direct medical costs, including hospitalizations, emergency room visits, physician fees, and antiepileptic medications, are significant. Estimates suggest that the annual direct and indirect costs of epilepsy in the U.S. can exceed tens of billions of dollars. Indirect costs, such as lost wages due to unemployment or underemployment, decreased productivity, and caregiver burden, further amplify this financial strain. Many individuals with epilepsy face discrimination in the workplace or educational settings, limiting their potential and contributing to socioeconomic disadvantages. A national plan aims to mitigate these costs by improving preventative measures, optimizing treatment, and facilitating greater participation in society.

Gaps in Research, Awareness, and Access to Care

The article in Epilepsy Currents delves deeply into the specific gaps that currently impede progress:

Research Funding Deficiencies: Compared to other chronic neurological conditions with similar prevalence and burden, epilepsy research has historically been underfunded. This disparity slows the pace of discovery in critical areas such as understanding epileptogenesis (how epilepsy develops), identifying genetic and environmental risk factors, developing new anti-seizure medications with fewer side effects, and finding cures. There’s also a pressing need for more research into Sudden Unexpected Death in Epilepsy (SUDEP), a devastating complication that claims thousands of lives annually.
Awareness and Education Deficit: Public understanding of epilepsy remains remarkably low. Misconceptions, ranging from believing seizures are contagious to associating them with mental illness, contribute to significant social stigma. This stigma can lead to isolation, discrimination, and a reluctance among individuals to disclose their condition or seek help. Furthermore, a lack of widespread knowledge about basic seizure first aid can lead to inappropriate or even harmful interventions during a seizure, or a failure to provide necessary assistance.
Inadequate Access to Optimal Care: Geographic location often dictates the quality of epilepsy care an individual receives. Rural and underserved areas frequently lack access to neurologists specializing in epilepsy (epileptologists) or to comprehensive epilepsy centers (CECs), which offer advanced diagnostic tools, surgical evaluations, and specialized therapies. Even when specialists are available, economic barriers, insurance limitations, and transportation challenges can prevent patients from accessing these critical services. This disparity means that many individuals with drug-resistant epilepsy, who could benefit from advanced treatments like surgery or neuromodulation, never receive the necessary evaluations.

Addressing Disparities and Co-morbidities

The article further highlights that these gaps are often exacerbated by socioeconomic and racial disparities. Minority populations and those with lower incomes frequently face even greater barriers to diagnosis and care, leading to worse health outcomes. A National Plan must explicitly address these inequities to ensure that advances benefit all Americans, regardless of their background or location.

Moreover, the publication emphasizes the need to address the significant co-morbidities associated with epilepsy. Beyond mental health issues, individuals with epilepsy are at higher risk for sleep disorders, cardiovascular disease, and bone density problems. A comprehensive national strategy would advocate for integrated care models that address these co-occurring conditions, promoting a more holistic approach to patient well-being. This requires better training for general practitioners and other healthcare professionals to recognize and manage these interconnected health challenges, and to understand when to refer patients to specialized epilepsy care.

Voices of Commitment: Official Responses and Expert Perspectives

Leadership at Epilepsy Alliance America

The Epilepsy Alliance America has been a driving force behind this collaborative initiative, reflecting its core mission to advocate for the rights and needs of the epilepsy community. Amanda Mitchell, MPH, LCCE, an esteemed EAA Board member and a co-author of the Epilepsy Currents article, expressed profound optimism about the publication’s potential impact. "This article is more than just a scientific paper; it’s a declaration of unity and a roadmap for change," Mitchell stated. "For too long, the epilepsy community has fought on fragmented fronts. This National Plan represents our collective commitment to transforming the landscape of epilepsy care and research, ensuring that every American living with this condition has the opportunity for a full and healthy life."

Joyce Bender, another influential EAA Board member and co-author, emphasized the personal dimension of the advocacy. "Having personally witnessed the struggles and triumphs within the epilepsy community, I know firsthand the urgency of this moment," Bender commented. "The ‘Consensus Priorities’ document is a beacon of hope. It translates the lived experiences of millions into concrete policy recommendations, demanding that our nation prioritizes epilepsy with the seriousness it deserves. We are grateful to our partners and the countless advocates who have contributed to this historic effort."

A spokesperson for Epilepsy Alliance America added, "This publication is a testament to the power of collaboration. We believe that by uniting our voices and resources, we can achieve systemic changes that will profoundly benefit the 3.4 million Americans affected by epilepsy. The EAA stands ready to work with policymakers, healthcare leaders, and the public to bring this National Plan to fruition."

The Power of Partnering Organizations

The collaborative nature of this initiative is its greatest strength, bringing together diverse perspectives and resources. Leaders from the partnering organizations echoed the sentiments of EAA, highlighting the critical importance of a unified strategy.

Dr. Sarah Miller, President of the American Epilepsy Society, commented, "As clinicians and researchers, we see the daily impact of epilepsy and the profound need for better treatments and ultimately, a cure. This collaborative paper is a crucial step towards aligning research priorities with clinical needs, ensuring that scientific advancements translate rapidly into improved patient care. The AES is proud to lend its scientific expertise to this essential national effort."

Dr. David Chen, CEO of CURE Epilepsy, emphasized the research funding aspect. "Our mission at CURE Epilepsy is to find a cure, and a national plan is indispensable for accelerating that journey. By coordinating research funding, fostering interdisciplinary collaboration, and establishing clear national priorities, we can maximize our collective impact and push the boundaries of discovery faster than ever before. This is a game-changer for epilepsy research."

A representative from the Epilepsy Foundation, a long-standing advocate for patients, noted, "This joint publication is a monumental achievement for the entire epilepsy community. It underscores the shared understanding that advocacy, awareness, and access to care must be addressed comprehensively. The Epilepsy Foundation is committed to leveraging its grassroots network and advocacy expertise to ensure this plan moves from paper to practice, impacting real lives across the country." The widespread endorsement of the initiative, extending beyond the core collaborators to numerous other organizations, further solidifies its legitimacy and underscores the broad consensus for its implementation.

Charting the Future: Implications of a Coordinated National Plan

A Holistic Approach to Epilepsy Care and Research

The implementation of a National Plan for Epilepsy, as outlined in the Epilepsy Currents publication, carries profound implications for the future of epilepsy care and research in the United States. It envisions a holistic ecosystem where every aspect of the condition, from basic science to public health education, is addressed in a coordinated and efficient manner.

Such a plan would likely lead to:

Increased and Targeted Research Funding: A national strategy would advocate for dedicated federal funding streams, allowing for long-term, strategic investments in critical research areas, including personalized medicine, seizure prediction technologies, and the development of non-pharmacological interventions. This could accelerate the discovery of new therapies, improve diagnostic tools, and ultimately lead to preventive measures and cures.
Standardized Best Practices and Improved Access: The plan would promote the development and dissemination of national guidelines for epilepsy diagnosis and treatment, ensuring a higher standard of care across all regions. It would also advocate for policies that address healthcare disparities, potentially through expanding access to specialized epilepsy centers, supporting telemedicine initiatives, and training more healthcare professionals in epilepsy management.
Enhanced Public Awareness and Education: Through robust public health campaigns, a National Plan could dismantle lingering stigmas, educate the public on seizure first aid, and foster a more inclusive society for individuals with epilepsy. This would empower patients, improve emergency responses, and reduce the social isolation often experienced by those with the condition.
Better Data Collection and Surveillance: A coordinated national effort would establish comprehensive data registries and surveillance systems to better track epilepsy prevalence, incidence, treatment outcomes, and co-morbidities. This data would be invaluable for informing future research, policy decisions, and resource allocation.
Integration of Mental Health Services: Recognizing the high rates of depression, anxiety, and other mental health challenges among individuals with epilepsy, a national plan would advocate for integrated care models that seamlessly combine neurological and psychiatric services, ensuring holistic patient support.

The ultimate goal is to create a future where epilepsy is no longer a hidden or misunderstood condition, but one that receives the appropriate attention, resources, and compassionate care it demands.

A Call to Action for Policy Makers and the Public

The publication in Epilepsy Currents is a pivotal moment, serving as both a culmination of extensive collaborative work and a launchpad for renewed advocacy. It is an unequivocal call to action for policymakers at all levels of government—federal, state, and local—to recognize epilepsy as a national public health priority. The collaborating organizations urge legislators to champion initiatives that translate the consensus priorities into tangible policies and allocate the necessary resources to implement a comprehensive National Plan for Epilepsy.

The Epilepsy Alliance America and its partners are committed to engaging with Congress, the National Institutes of Health, the Centers for Disease Control and Prevention, and other relevant governmental bodies to advance this agenda. They will continue to provide expert guidance, share data, and amplify the voices of patients and families who stand to benefit most from a coordinated national effort.

Furthermore, the public has a vital role to play. Increased awareness, support for advocacy efforts, and a willingness to challenge misconceptions are crucial. Individuals are encouraged to learn more about epilepsy, share their stories, and engage with their elected officials to express their support for a National Plan. More information, including a detailed list of consensus priorities and endorsing organizations, is available at https://www.epilepsy-national-plan.org/consensus-priorities.

The momentum is undeniable. With this landmark publication, the epilepsy community has articulated a clear, unified vision for a future where epilepsy no longer dictates the lives of millions. The time for a National Plan for Epilepsy is now, promising a brighter, healthier future for all affected by this complex neurological disorder.