The Epilepsy Leadership Council

What The Epilepsy Leadership Council does

The Epilepsy Leadership Council (ELC) is a U.S.-based nonprofit coalition of more than 60 organizations, including patient advocacy groups (e.g., Epilepsy Foundation, CURE Epilepsy, TSC Alliance, Dravet Syndrome Foundation), professional societies (American Epilepsy Society, National Association of Epilepsy Centers), and federal agencies (CDC, NINDS, VA Epilepsy Centers of Excellence). Founded in 2012 originally as Vision 2020, the ELC coordinates cross-sector action to advance epilepsy advocacy, education, research, and support, addressing gaps in clinical care, research funding, and policy through collective initiatives rather than direct service delivery.

ELC's core programmatic offerings include a Legislative Advocacy Program (with the Congressional Epilepsy Caucus Toolkit), Educational Webinars on federal advocacy and policy, and two working groups — the Advocacy Committee and the Communications Committee — that coordinate member-driven projects. The underlying technology stack is minimal: a WordPress-hosted website serves as the membership portal, content hub, and resource distribution point; there are no proprietary software products, APIs, or AI capabilities. The coalition is governed by a member-elected Steering Committee with 2-year terms.

ELC operates as a non-commercial coalition: membership is free for eligible 501(c)(3) nonprofits and federal agencies, the organization is a component/committee of the American Epilepsy Society (which provides administrative infrastructure at its Chicago headquarters), and revenue is grant-driven, with Eisai, Inc. explicitly disclosed as a supporter. The organization serves approximately 3.4 million Americans with epilepsy and targets a U.S.-only footprint, with no global expansion or commercial monetization model in place.

Name

The Epilepsy Leadership Council

Legal name

The Epilepsy Leadership Council

Website

https://epilepsyleadershipcouncil.org

Company type

Private

Founded year

2012

Operating status

Operating

Headcount range

1–10 employees

Short description

The Epilepsy Leadership Council is a U.S. nonprofit coalition of 60+ organizations, including patient advocacy groups, professional societies, and federal agencies, that coordinates collective advocacy, education, and policy initiatives to improve outcomes for people living with epilepsy.

Ownership category

akta.pro rank

Product category

Healthcare Advocacy Coalition

NAICS

Professional Organizations (81392)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Association & Society Conference Management (Nonprofit, Professional Bodies) (THAHACAA)

Keywords

• Epilepsy advocacy coalition
• Nonprofit health coalition
• Policy advocacy programs
• Epilepsy education webinars
• Patient advocacy network

Headquarters

HQ city

San Francisco

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Grant Funding: The Epilepsy Leadership Council is supported by grant funding from pharmaceutical companies and other organizations. The organization explicitly acknowledges that it is supported in part by a grant from Eisai, Inc. As a component of the American Epilepsy Society, the ELC benefits from the administrative home provided by AES.

Go-to-market motion1 record

Distribution channels2 records

Marketing channels6 records

Core offering

The Epilepsy Leadership Council (ELC) is a coalition of over 60 nonprofit organizations, professional societies, and federal agencies that coordinates collective advocacy, education, and policy initiatives to improve the lives of people living with epilepsy. It operates as a committee of the American Epilepsy Society, offering a Legislative Advocacy Program, Educational Webinars, Working Groups, and a Congressional Epilepsy Caucus Toolkit to its member organizations.

Product overview

The Epilepsy Leadership Council (ELC) is a coalition of over 60 nonprofit organizations, professional societies, and federal agencies that does not offer a unified software product but rather provides a portfolio of advocacy programs and services. The core offerings include a Legislative Advocacy Program with Congressional Epilepsy Caucus Toolkit, Educational Webinars for advocacy training, and Working Groups (Advocacy Committee and Communications Committee) that coordinate efforts across member organizations. The ELC Membership Network enables organizations to collaborate, amplify advocacy voices, and access shared resources. These programs work together to advance epilepsy care, research, and policy initiatives through collective action.

Differentiator

Problem solved

Functional benefit

Products and services

• Legislative Advocacy Program Federal advocacy initiative including policy agenda development, Congressional Epilepsy Caucus toolkit, and advocacy webinars to support epilepsy-related policy changes for member organizations.
• Educational Webinars Expert-led training resources covering federal advocacy, policy updates, and strategies for engaging with lawmakers on epilepsy issues, including Federal Advocacy 101 and Epilepsy Funding Across Federal Agencies.
• Advocacy Committee Working Group Working group that leads ELC's federal advocacy efforts including policy agenda development, federal sign-on opportunities, and resource development for member organizations.
• Communications Committee Working Group Working group that manages ELC's communication strategy including website content, newsletters, and external partner communications.
• ELC Membership Network Coalition membership program for nonprofit organizations, professional societies, and federal agencies working in epilepsy, offering collaboration, advocacy amplification, resource access, and strategic partnership opportunities.
• ELC Congressional Caucus Toolkit Comprehensive toolkit with FAQ, meeting tips, sample emails, and action alerts for building Congressional Epilepsy Caucus membership.

Named customers10 records

Segments6 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Two partnerships are on record, tiered core.

• American Epilepsy SocietycoreOthersThe Epilepsy Leadership Council is a committee/coalition of the American Epilepsy Society. AES serves as the administrative home for the ELC, providing operational infrastructure, staff support, and institutional credibility. The ELC is described as 'a component of the American Epilepsy Society.'
• 60+ Member OrganizationscoreOthersThe ELC is a coalition of over 60 nonprofit organizations, professional societies, and federal agencies. Members include advocacy organizations (Epilepsy Foundation, Dravet Syndrome Foundation, TSC Alliance), professional societies (American Epilepsy Society, National Association of Epilepsy Centers), and federal agencies (CDC, NINDS, VA Epilepsy Centers of Excellence).

Scale indicators4 records

Recent moves6 records

Expansion highlights4 records

Direct peers

• Friends of Cancer Research: A coalition-style advocacy organization that brings together patients, researchers, federal agencies, and industry to drive policy and research priorities. Highly comparable to ELC's interdisciplinary, federal-engaged advocacy model focused on a single disease area.
• National Health Council: A membership-based umbrella coalition of patient advocacy organizations, professional societies, and health-related nonprofits. Directly comparable to ELC's coalition model of convening diverse nonprofit and professional stakeholders around shared policy goals in healthcare.
• National Organization for Rare Disorders (NORD): A coalition-style umbrella organization that convenes patient advocacy groups, professional societies, and federal partners to advance rare disease policy, research, and education. Closely mirrors ELC's role as a convener of disease-specific advocacy stakeholders.
• Research!America: A membership alliance advocating for stronger federal investment in health research, with member organizations spanning universities, patient groups, and scientific societies. Comparable to ELC's federal advocacy and coalition-building focus.

Broad incumbents

• American Cancer Society Cancer Action Network: The advocacy arm of the American Cancer Society, focused on federal and state policy, legislative engagement, and grassroots mobilization. Comparable to ELC as a dedicated advocacy organization within a larger parent society, but operates at much greater scale and resourcing.
• National Multiple Sclerosis Society: A national disease-specific advocacy organization with legislative, research, and program operations. Comparable to ELC in disease focus and federal policy engagement, but operates as a single integrated nonprofit rather than a coalition umbrella.
• Alzheimer's Association: A leading disease-specific advocacy organization with federal policy engagement, research funding, and a national network of chapters. Comparable to ELC's model of organizing a community around a single neurological condition, though far larger in scope and budget.
• Epilepsy Foundation: The largest U.S. patient advocacy organization dedicated to epilepsy, also a member of ELC. Comparable as a direct in-disease advocacy peer with public-facing programs, research funding, and policy engagement, though broader in scope and independently funded.
• ALS Association: A national disease-specific advocacy organization with federal legislative engagement, research investment, and care services. Comparable in disease-advocacy model and federal focus, though structured as a single nonprofit rather than a coalition of organizations.

Emerging players

• Partnership to Fight Chronic Disease: An advocacy coalition that brings together patient organizations, providers, and industry partners to influence chronic disease policy. Comparable in coalition structure and cross-stakeholder policy focus, though broader in disease scope than ELC.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat3 records

Key risks6 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/the-epilepsy-leadership-council

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about The Epilepsy Leadership Council