What Stichting Epilepsienl does

Stichting EpilepsieNL is a Dutch nonprofit foundation (stichting) that serves as the unified national patient organization for epilepsy in the Netherlands. Formed in 2021 through the merger of the Epilepsiefonds and Epilepsie Vereniging Nederland (EVN), the organization traces its roots to approximately 1893, giving it more than 130 years of operating history. It serves a target population of roughly 200,000 people living with epilepsy in the Netherlands, along with their families, caregivers, healthcare professionals, schools, and employers, through a portfolio that includes the epilepsie.nl information portal, the Epilepsielijn telephone helpline staffed by trained information officers and peer volunteers, the EpilepsieNL Magazine periodical, the Visie op Epilepsie podcast, the annual EpilepsieLoop fundraising walk, and the Aanvalsdetectie Keuzehulp decision-support tool that helps patients select from seizure detection devices such as NightWatch, Epi-Care, Emfit, and Epimonitor. The organization is not a technology company — its technology footprint is limited to standard web, email, and payment infrastructure supported by IT partner Asimo Networks and brand identity by Total Design.

The business model is donation-funded and community-led. Revenue streams include individual donations (one-time, monthly, and annual tiers of €5–€120 or custom), legacy bequests (nalaten), corporate giving, and a flagship partnership with the Nationale Postcode Loterij that has contributed more than €770,000 since 1998. The organization distributes scientific research subsidies through a Scientific Advisory Board and patient expert panel — four projects were funded in September 2025 — and collaborates on clinical research with CHDR, UMC Utrecht, and through the BRAINS cross-disease consortium with Hersenstichting and Alzheimer Nederland. All information, helpline, and education services are provided free of charge; seizure detection devices are sold commercially at €1,000–€2,000 with up to €1,500 in subsidy available through a partner fund for low-income patients. The organization is governed by a Raad van Toezicht (chaired by Mascha Buiting from August 2025) and led operationally by temporary board member Britta Bouma-Blok with MT member for Knowledge & Innovation Laura M'Rabet. EpilepsieNL holds CBF Erkend and ANBI status, is headquartered in Houten, Netherlands, and operates exclusively within the Dutch market.

Name

Stichting Epilepsienl

Legal name

Stichting EpilepsieNL

Website

https://epilepsie.nl

Company type

Private

Founded year

1893

Operating status

Operating

Headcount range

11–50 employees

Short description

Stichting EpilepsieNL is the unified Dutch nonprofit patient organization serving approximately 200,000 people with epilepsy in the Netherlands through free information, the Epilepsielijn helpline, research subsidies, advocacy, and community events including the annual EpilepsieLoop fundraiser.

Ownership category

akta.pro rank

Product category

Patient Advocacy & Non-Profit Health Support

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Educational Support Services (611710), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300)

akta.pro primary industry

Epilepsy & Seizure Disorders (HLAKAIAB)

akta.pro secondary industries

Disability Services & Independent Living Support (BPAGACAG), Disability Rights & Accessibility Advocacy (BPAGAFAF)

Keywords

• Epilepsy patient support
• Nonprofit health foundation
• Seizure detection guidance
• Epilepsy research funding
• Patient advocacy services

Headquarters

HQ city

Houten

HQ country

Netherlands

HQ region

Europe

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations from individual donors: Individual donations through one-time gifts, monthly subscriptions, or annual contributions. EpilepsieNL receives donations via direct giving, donor membership, and legacy bequests (nalaten).
2. Nationale Postcode Loterij partnership: Long-term partnership with the Nationale Postcode Loterij since 1998, receiving contributions from lottery proceeds supporting the organization's work.
3. Corporate partnerships and sponsorships: Corporate giving programs where companies support EpilepsieNL financially through campaigns and partnerships.
4. Research subsidies and grants: Funding provided to researchers through EpilepsieNL subsidies for scientific epilepsy research, supported by various grants.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels8 records

Core offering

Stichting EpilepsieNL is a Dutch nonprofit patient foundation that provides free information, support services, advocacy, and research funding for the approximately 200,000 people in the Netherlands living with epilepsy and their families. Core offerings include the EpilepsieNL information website, the Epilepsielijn telephone helpline, an interactive seizure detection device choice tool, educational publications and podcasts, and the annual EpilepsieLoop fundraising event.

Product overview

EpilepsieNL operates as a charitable foundation (stichting) providing comprehensive support for people with epilepsy in the Netherlands. The organization's offerings center on its main information website (epilepsie.nl), which serves as the primary digital platform delivering educational content about epilepsy, downloadable publications, and news. The Epilepsielijn telephone hotline provides direct support through trained information officers and experienced volunteers. The Aanvalsdetectie Keuzehulp is an interactive decision-support tool helping individuals select appropriate seizure detection devices (NightWatch, Epi-Care, Emfit, Epimonitor). Additional offerings include the EpilepsieNL Magazine periodical, the annual EpilepsieLoop awareness event, free educational downloads and the basisset hulpmiddelen starter kit. The organization also funds scientific research and advocates for better epilepsy care.

Differentiator

Problem solved

Functional benefit

Brands

• EpilepsieNL Magazine: Magazine publication providing information about epilepsy for patients and relatives.
• EpilepsieLoop
• Epilepsielijn

Products and services

• EpilepsieNL Website and Information Portal Primary digital platform providing comprehensive information about epilepsy, including educational content, downloadable resources, news articles, and practical guidance for people with epilepsy and their families.
• Epilepsielijn (Epilepsy Hotline) Telephone helpline providing information about epilepsy and connections to experienced volunteers who can share personal experiences with epilepsy.
• Aanvalsdetectie Keuzehulp (Seizure Detection Choice Tool) Interactive decision-support tool helping individuals select appropriate seizure detection devices based on seizure types, age, and usage context (indoor/outdoor, day/night).
• EpilepsieNL Magazine Periodical publication providing news, stories, and information about epilepsy research and living with epilepsy.
• Downloads and Educational Materials Free downloadable resources including fact sheets, first aid posters, guides on seizure types, medication information, and school-related materials.
• Basisset Hulpmiddelen (Basic Aid Kit) Free toolkit containing information about epilepsy and practical first aid cards for responding to seizures.
• Visie op Epilepsie Podcast Podcast series discussing epilepsy-related topics including medication shortages, personal experiences, and research developments.
• Educational Webinars Educational webinars about seizure detection and epilepsy management for patients, caregivers, and healthcare professionals.
• EpilepsieLoop Annual Walking Event Annual walking event to raise awareness and funds for epilepsy research, held in various Dutch cities.
• Epilepsy Research Subsidies Research subsidies awarded by EpilepsieNL to fund scientific epilepsy research projects.
• Seizure Detection Devices (featured via Aanvalsdetectie Keuzehulp) Curated seizure detection devices including NightWatch, Epi-Care, Emfit, and Epimonitor, featured through the organization's choice tool; subsidies of up to €1,500 available for low-income patients via a partner fund.

Quantifiable outcome

• €286,729 raised by EpilepsieLoop 2025 participants for epilepsy research
• +3 more outcomes

Named customers4 records

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Seven partnerships are on record, tiered core and minor.

• Asimo NetworkscoreTechnology or IntegrationAsimo Networks has been the IT partner of EpilepsieNL since 2022, providing technology infrastructure and support for the organization's digital operations.
• Total DesigncoreStrategic or Co-development PartnerDesign agency partnership for brand identity and communication materials. Total Design worked with EpilepsieNL on rebranding from Epilepsiefonds to the new EpilepsieNL identity.
• BRAINScoreStrategic or Co-development PartnerBRAINS is a collaboration between Hersenstichting, Alzheimer Nederland, and EpilepsieNL, launched in November 2023. The partnership funds joint research into epilepsy and neurological conditions. Two new research projects have been awarded through BRAINS.
• KempenhaeghecoreStrategic or Co-development PartnerStrategic collaboration between EpilepsieNL and Kempenhaeghe epilepsy center to boost epilepsy care in the Netherlands, announced April 2024.
• SEINcoreStrategic or Co-development PartnerStrategic collaboration between EpilepsieNL and SEIN epilepsy center to boost epilepsy care in the Netherlands, announced April 2024.
• CHDR (Centre for Human Drug Research)minorStrategic or Co-development PartnerCollaboration with CHDR in Leiden for clinical trials of new epilepsy medications and diagnostic methods. EpilepsieNL supports recruitment and patient involvement in these studies.
• UMC UtrechtminorStrategic or Co-development PartnerEpilepsieNL is co-funding research into medicinal cannabis (CBD) against childhood epilepsy conducted by pediatric neurologist Floor Jansen at UMC Utrecht.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Epilepsy Foundation: US national epilepsy patient organization offering information, helplines, advocacy, research funding and community events — the closest international analogue to EpilepsieNL's combined awareness, support and grantmaking model.
• Epilepsy Action: UK-based national epilepsy charity providing helplines, online information, local support services, research funding and campaigning — directly comparable in mission and operating model to EpilepsieNL.
• Epilepsy Society: UK national epilepsy charity combining research, residential medical care, information and advocacy — a direct peer given its parallel integration of research funding, clinical partnerships and patient support.
• International Bureau for Epilepsy (IBE): Global umbrella body for national epilepsy patient associations, of which EpilepsieNL is a member-class peer — comparable mission in cross-border epilepsy advocacy, awareness and patient-organization capacity building.

Regional players

• Hersenstichting: Dutch brain-disorder charity that co-funds the BRAINS collaboration with EpilepsieNL and Alzheimer Nederland; directly comparable as a Netherlands-only health charity using donations, lottery income and research subsidies.
• KWF Kankerbestrijding: Largest Dutch health charity, operating a donation- and lottery-funded model with significant research subsidies — relevant comparable for fundraising scale, lottery partnership mechanics and Dutch share-of-wallet dynamics.
• Stichting MS Research: Dutch nonprofit funding scientific research into multiple sclerosis — directly comparable as a Netherlands-only disease-specific charity that distributes research subsidies and runs donor-funded campaigns.
• Alzheimer Nederland: Dutch national dementia charity and BRAINS co-funder with EpilepsieNL — comparable in scale, donation-funded model and Dutch-only geographic remit focused on a single neurological condition.

Emerging players

• Epilepsy Connections: Smaller Scotland-based epilepsy charity providing information, peer support and community engagement — an emerging-player analogue of EpilepsieNL's grassroots service model, though at materially smaller scale.
• Epilepsy Research Institute: UK organization focused on funding and coordinating epilepsy research, comparable to EpilepsieNL's research-subsidy and BRAINS-style collaboration activities, though narrower in scope (research-only, no patient services).

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/EpilepsieNL
• LinkedInlinkedin.com/company/epilepsiefonds
• Instagraminstagram.com/epilepsienl

Compliance3 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Stichting Epilepsienl