INTERNATIONAL BUREAU FOR EPILEPSY

What INTERNATIONAL BUREAU FOR EPILEPSY does

The International Bureau for Epilepsy (IBE) is an incorporated, not-for-profit international NGO founded in 1961 and registered in the District of Columbia, USA (Charter ID 721834-DNP), with operational contact in Dublin, Ireland. It serves as the recognized international umbrella body for national epilepsy patient and advocacy organizations, operating a federation of nearly 140 chapters across more than 100 countries organized into seven regional committees that mirror WHO regional definitions (Africa, Eastern Mediterranean, Europe, Latin America, North America, South East Asia, and Western Pacific). IBE addresses the social, civil-rights, and policy dimensions of epilepsy, including education, employment, insurance, driving licence restrictions, public awareness, and stigma reduction, while positioning epilepsy as a global health priority through advocacy at the WHO, UN, and regional bodies.

IBE's product and program portfolio spans awareness campaigns (International Epilepsy Day, #50MillionSteps), advocacy toolkits (Advocate's Toolkits for Africa and the Americas, co-developed with PAHO), awards programs (Golden Light Awards, Ambassador for Epilepsy, Lifetime Achievement, Social Accomplishment), specialized programs for women and youth, educational E-Learning Modules launched in 2023, and community platforms (IBE Knowledge Hub, Community Council, Corporate Council). Its digital footprint includes the main website (ibe-epilepsy.org), the Knowledge Hub community engagement platform, e-learning modules on epilepsy topics, and social media channels on Facebook, X, and YouTube. The organization does not offer a public or partner-facing API or commercial technology product, as its assets are built around community engagement, content distribution, and advocacy enablement rather than software monetization.

IBE's business model is a typical non-profit federation structure funded primarily by recurring chapter membership dues paid by national epilepsy organizations, supplemented by grants from pharmaceutical industry consortia (preferred to avoid single-sponsor advantage), donations from public and private sources, and program-specific support such as the EpilepsyPOWER Consortium. Revenue is not publicly disclosed, and IBE does not sell products or commercial services; instead it generates value for chapters through global networking, capacity building, policy advocacy, and awareness campaigns. IBE is co-located structurally with the International League Against Epilepsy (ILAE) — the medical professional society — through co-organization of the biennial International Epilepsy Congress, joint awards, and the Global Campaign Against Epilepsy, creating a complementary patient-and-clinical advocacy ecosystem.

Name

INTERNATIONAL BUREAU FOR EPILEPSY

Legal name

International Bureau for Epilepsy

Website

https://ibe-epilepsy.org

Company type

Private

Founded year

1961

Operating status

Operating

Headcount range

11–50 employees

Short description

The International Bureau for Epilepsy (IBE), founded in 1961, is an incorporated not-for-profit international umbrella body for national epilepsy patient organizations, operating nearly 140 chapters across more than 100 countries in seven WHO-defined regions to advance epilepsy advocacy, awareness, capacity building, and human rights through programs, campaigns, and partnerships.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Global Health Non-Profit Services

NAICS

Business Associations (813910)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Epilepsy & Seizure Disorders (HLAKAIAB)

Keywords

• Epilepsy advocacy networks
• Global health advocacy
• Patient advocacy services
• Neurological disorder awareness
• Nonprofit membership organization

Headquarters

HQ city

Washington, D.C.

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2B

Offering type

Services

Cost components

Personnel, Marketing or Sales, Operations, Technology or R&D, Others

Revenue model

1. Chapter Membership Dues: IBE is funded mainly by membership dues from its chapters, which are national epilepsy organizations
2. Pharmaceutical Industry Funding: IBE accepts funding from pharmaceutical companies and private companies when it believes it will result in benefit to IBE, without compromising independence. They prefer funding consortia to avoid competitive advantage to single companies
3. Donations: IBE accepts donations from public and private sources to support programs and activities

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

The International Bureau for Epilepsy (IBE) is an international non-profit membership organization that represents national epilepsy patient and family organizations across nearly 140 chapters in over 100 countries. It delivers global advocacy at WHO and UN levels, awareness campaigns such as International Epilepsy Day and #50MillionSteps, capacity-building programs for chapters, and the biennial International Epilepsy Congress co-organized with ILAE, addressing the social, civil rights, and quality-of-life aspects of epilepsy.

Product overview

The International Bureau for Epilepsy (IBE) is a non-profit membership organization (not a technology product company) that operates a portfolio of advocacy programs, publications, and awareness initiatives. The organization provides a suite of programs including: advocacy toolkits (Advocate's Toolkit for Africa), awareness campaigns (International Epilepsy Day, #50MillionSteps), awards (Golden Light Awards, Ambassador for Epilepsy Awards), educational resources (E-Learning Modules, IGAP Unpacked), youth engagement (Global Youth Programme, Youth Team), congress organization (International Epilepsy Congress with ILAE), regional initiatives (Epilepsy Alliance Europe, IBE Africa), and community platforms (Knowledge Hub, Community Council). These offerings work together to support IBE's mission of improving quality of life for people with epilepsy through global advocacy, awareness raising, capacity building, and research promotion.

Differentiator

Problem solved

Functional benefit

Products and services

• International Epilepsy Day Annual international awareness day celebrated globally to raise awareness about epilepsy, managed in collaboration with ILAE on the second Monday of February each year.
• International Epilepsy Congress (IEC) Biennial international congress co-organised with ILAE, bringing together the worlds of science, advocacy, and lived experience to advance epilepsy treatment and care.
• Golden Light Awards Bi-annual global award program celebrating young people with epilepsy, highlighting their achievements and contributions.
• IBE E-Learning Modules Online educational modules launched in 2023 to provide training and capacity building for people with epilepsy, families, and advocates on various aspects of epilepsy care and awareness.
• Global Youth Programme Program designed to engage and empower young people aged 18-35 with epilepsy globally through workshops, summits, and leadership development.
• Women and Epilepsy Programme Program addressing the specific needs and challenges faced by women with epilepsy, including topics around menstruation, contraception, fertility, pregnancy, and menopause.
• IBE Knowledge Hub Community engagement platform where chapters can set up profiles, network, and share resources and best practices.
• Advocate's Toolkit for Making Epilepsy a Health Priority in Africa A comprehensive toolkit providing guidance, ideas, and step-by-step resources for civil society organisations in Africa to develop advocacy projects around epilepsy.
• Advocate's Toolkit for Reducing Epilepsy Stigma in Africa A 'how to' guide for recognising distinct types and forms of stigma, containing practical information, best practice examples, case-studies and templates for effective stigma reduction interventions.
• Advocate's Toolkit for Making Epilepsy a Priority in the Americas Toolkit co-developed with PAHO to build advocacy capacity for civil society organisations in the Americas region to make epilepsy a health priority.
• IBE INVOLVE Flagship initiative including Community Council, Global Epilepsy Leader programme, and Global Epilepsy Needs Study aimed at involving people with lived experience in research and advocacy.
• #50MillionSteps Campaign Annual awareness campaign focused on epilepsy advocacy and fundraising, engaging the global epilepsy community through a walking challenge.
• Global Advocacy Program Policy advocacy initiatives including work with WHO, UN, and regional bodies to position epilepsy as a global health priority and advance the Intersectoral Global Action Plan on Epilepsy (IGAP).
• Epilepsy Alliance Europe European regional initiative supporting epilepsy organisations across Europe through networking, best practice exchange, and collaborative advocacy.

Quantifiable outcome

• WHO IGAP adopted in 2022 - international commitment to improve epilepsy care globally
• +2 more outcomes

Named customers5 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

Eleven partnerships are on record, tiered core and major.

• International League Against Epilepsy (ILAE)coreStrategic or Co-development PartnerIBE works in close liaison with ILAE, an organization of medical professionals involved in medical and scientific issues of epilepsy. The two organizations co-organize the biennial International Epilepsy Congress (IEC), Global Campaign Against Epilepsy, and various advocacy initiatives. They also jointly award the Ambassador for Epilepsy, Lifetime Achievement, and Social Accomplishment Awards.
• World Health Organization (WHO)coreStrategic or Co-development PartnerIBE has been in official working relations with WHO for many years and holds special consultative status on the Economic and Social Council of the United Nations (ECOSOC). IBE is member of CoNGO (Conference of Non-Governmental Organisations). WHO Member States adopted the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) in 2022, which IBE actively promotes.
• OneNeurology PartnershipcoreStrategic or Co-development PartnerIBE joined the OneNeurology Partnership in February 2023, which brings together leading organizations in neurology to improve lives of people with neurological conditions. IBE CEO Donna Walsh serves as Chair of the OneNeurology Global Partnership. The partnership published a position paper calling for UN Member States to recognize neurological conditions as a distinct pillar in NCD response.
• Pan American Health Organization (PAHO)majorStrategic or Co-development PartnerIBE co-developed the Advocate's Toolkit to Make Epilepsy a Priority in the Americas with PAHO, officially launched in September 2024. This partnership focuses on advocacy capacity building for civil society organizations in the Americas region.
• Epilepsy Alliance EuropemajorStrategic or Co-development PartnerIBE, via Epilepsy Alliance Europe, hosted the EpilepsyPOWER consortium meeting in Dublin in October-November 2023. The consortium is developing 14 learning modules targeting people with epilepsy and caregivers for the IBE Involve program.
• International Federation of Neurological Associations (EFNA)majorStrategic or Co-development PartnerIBE works with EFNA as part of the broader neurology patient advocacy community, particularly in European policy advocacy efforts.
• European Patients Forum (EPF)majorStrategic or Co-development PartnerIBE benefits from collaborative partnerships including EPF, contributing to patient advocacy at European level.
• European Medicines Agency (EMA)majorStrategic or Co-development PartnerIBE maintains collaborative partnership with EMA for patient input into medicines evaluation and regulatory processes.
• EpilepsyPOWER ConsortiummajorStrategic or Co-development PartnerInternational consortium developing 14 learning modules for people with epilepsy and caregivers, hosted by IBE via Epilepsy Alliance Europe in Dublin, Ireland (October-November 2023).
• World Federation of NeurologymajorStrategic or Co-development PartnerIBE joins WFN and ILAE for joint webinars celebrating milestones like one year of IGAP adoption.
• African Disability AlliancemajorStrategic or Co-development PartnerIBE Africa Chair Youssouf Noormamode serves as Chairperson of Africa Disability Alliance, advocating for adoption of Protocol on Rights of Persons with Disabilities through ARADI continental project supported by EU and CBM.

Scale indicators4 records

Recent moves6 records

Expansion highlights7 records

Emerging players

• OneNeurology Partnership: Multi-stakeholder partnership IBE joined in February 2023, with IBE CEO as Chair. Comparable as an emerging advocacy coalition for neurological conditions globally, intersecting with IBE's mission and offering a peer platform for cross-disease collaboration on WHO NCD policy.
• Citizens United for Research in Epilepsy (CURE): US-based nonprofit focused specifically on epilepsy research funding and patient outcomes. Comparable as a disease-specific patient advocacy organization but narrower in scope (research funding focus) compared to IBE's broader social/policy advocacy mandate.

Others

• European Patients Forum (EPF): Cross-disease European umbrella for patient organizations, with which IBE collaborates. Comparable as a peer-level convener in patient advocacy policy space, though broader in scope — a relevant ecosystem participant rather than direct competitor.

Broad incumbents

• World Federation of Neurology (WFN): Global umbrella for national neurology societies, jointly hosting webinars with IBE/ILAE. Comparable as a federated global health professional society with WHO relations, but covers all neurological conditions rather than specializing in epilepsy — a broader incumbent in an overlapping category.
• American Epilepsy Society: US-based professional society for clinicians and researchers in epilepsy, comparable in mission alignment with ILAE (which it complements at the national level). Strong peer for IBE's medical-professional partner ecosystem, though not a direct patient advocacy competitor.
• Epilepsy Foundation (USA): Major North American patient advocacy organization and IBE chapter, with substantially larger resources. Comparable in mission (epilepsy patient support, advocacy, research funding) but operates as a single-country incumbent rather than a global federation, making it more comparable in patient advocacy depth but not in geographic scope.

Direct peers

• European Federation of Neurological Associations (EFNA): European umbrella for neurology patient organizations, where IBE CEO Donna Walsh previously served as Executive Director. Highly comparable in model (federation of national patient organizations, EU-level policy advocacy, training programs) and overlapping stakeholder base.
• International League Against Epilepsy (ILAE): ILAE is IBE's closest peer — a global organization of medical professionals focused on epilepsy, sharing joint congresses, awards, and advocacy. While ILAE serves clinicians/scientists and IBE serves patients/lay organizations, they are operationally intertwined with shared leadership (3 ILAE ExCo members sit on IBE's IEC) and co-created campaigns.
• Epilepsy Alliance Europe: European regional epilepsy umbrella closely affiliated with IBE (IBE hosts its consortium meetings). Directly comparable as a regional chapter-level convener of national epilepsy organizations, focusing on EU policy advocacy and patient engagement — a regional mirror of IBE's global model.

Regional players

• Epilepsy Action (UK): Major UK-based epilepsy patient charity and IBE chapter. Comparable in patient-facing services (helpline, information, advocacy) but operates as a single-country incumbent rather than an international federation, making it a strong regional peer rather than direct global competitor.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/IBESocialMedia
• YouTubeyoutube.com/channel/UCybzRWXm-s8o7YhU1Wg6KCA
• Facebookfacebook.com/433010986735479
• LinkedInlinkedin.com/company/international-bureau-for-epilepsy

Revenue estimate

Valuation estimate

Number of profiles

Profiles16 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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