What Erfocentrum does

Erfocentrum is the National Information Centre for Heredity in the Netherlands, established in 2000 as an independent non-profit spun off from VSOP and headquartered in Amersfoort. Its mission is to provide free, reliable, and independent information on heredity, genetics, and congenital conditions to three principal audiences: the general Dutch public, patients with hereditary conditions and their families, and healthcare professionals (particularly clinical geneticists). The organization operates a portfolio of Dutch-language websites including erfelijkheid.nl (the main consumer/professional portal), ikhebdat.nl (a community-oriented platform), uniek-erfelijk.nl (rare hereditary conditions), and artsengenetica.nl (clinician-facing), supported by a Drupal-based content management system. Content formats include a content library covering over 500 hereditary conditions, written patient brochures, video explainers, decision aids (DBA tools), and the Erfolijn telephone helpline staffed during office hours.

Erfocentrum's product surface is fundamentally informational rather than transactional. It does not sell to end users; instead, it produces and curates content that is referenced by patient organizations (e.g., VSOP, NFK, KWF), clinical genetics departments in university medical centres, NKI/AVL, and policymakers. Notable content programmes include family-communication materials on hereditary cancer (developed with NFK and KWF) and the MODY diabetes project in collaboration with the Diabetes Fonds. The organization is also a partner in the PSIDER-Heart research consortium (2022-2026) alongside LUMC, UMCG, and Amsterdam UMC, contributing public-facing information on gene therapy for inherited cardiac conditions. Distribution is multi-channel, spanning the websites, the Erfolijn helpline, social media (Instagram, LinkedIn, Facebook, YouTube), and printed materials.

The business model is that of a publicly funded non-profit. Core operating revenue derives from a multi-year subsidy from the Dutch Ministry of Health (VWS), supplemented by project-based grants from UMCs and research funders such as NKI/AVL and the Diabetes Fonds. Content and services are provided free to all users. Governance consists of a small executive team (approximately four staff) overseen by a supervisory board, with operational continuity anchored in multi-year planning documents such as the Jaarverslag 2025 and Meerjarenplan 2026-2028. The organization is registered with the KvK under non-profit classification and operates under standard GDPR compliance for its web properties.

Name

Erfocentrum

Legal name

Stichting ERFO-centrum

Website

https://erfelijkheid.nl

Company type

Private

Founded year

2000

Operating status

Operating

Headcount range

1–10 employees

Short description

Erfocentrum is the Dutch national information centre for heredity, providing free, independent genetics information to the public, patients and families, and healthcare professionals through websites, decision aids, and a telephone helpline.

Ownership category

akta.pro rank

Headquarters

HQ city

Amersfoort

HQ country

Netherlands

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Institutional subsidy / government funding: The Erfocentrum is a not-for-profit organisation mainly financed by the Ministry of Health, Welfare and Sport (VWS) and the Dutch departments of clinical genetics. It also receives contributions from the departments of Clinical Genetics of the academic hospitals and from NKI/AVL. Additionally, it participates in publicly funded projects with various partners.

Pricing tiers

Go-to-market motion1 record

Distribution channels6 records

Marketing channels8 records

Core offering

Erfocentrum provides free, independent, and reliable information about heredity, genetics, and hereditary conditions to the Dutch public through multiple audience-specific websites, an email and telephone helpline (Erfolijn), decision aids (Keuzehulpen), printed brochures, and educational films. It also serves healthcare professionals via a dedicated platform (artsengenetica.nl) and delivers training to genetic counselors.

Product overview

Erfocentrum operates a multi-platform information ecosystem focused on genetics and health. The core offering is Erfelijkheid.nl, the leading Dutch-language source for hereditary information serving the general public, patients, and healthcare professionals. The portfolio includes three main websites (Erfelijkheid.nl for general audiences, Ikhebdat.nl for children, Uniek-erfelijk.nl for parents of children with rare genetic conditions, and Artsengenetica.nl for professionals), supplemented by the Erfolijn personalized question service, four named decision aids (Keuzehulpen) for preparing genetic counseling consultations, downloadable brochures, and YouTube video content. All materials are written at B1 reading level and updated regularly.

Differentiator

Problem solved

Functional benefit

Brands

• Ikhebdat.nl: Website for children about genetics
• Uniek-erfelijk.nl
• Erfolijn
• Artsengenetica.nl

Products and services

• Erfelijkheid.nl Main public website of Erfocentrum providing free, independent, and reliable information about heredity, genetics, and hereditary conditions to the general Dutch public, patients, and families. Content is written at B1 language level and reviewed by clinical geneticists and other specialists.
• Ikhebdat.nl Dedicated website providing child-friendly information about genetics and hereditary conditions for children aged 8 to 12, using accessible language and visuals.
• Uniek-erfelijk.nl Dedicated website for parents and caregivers of children with intellectual disabilities, rare conditions, or unexplained developmental issues, providing information on hereditary syndromes and care pathways.
• Artsengenetica.nl Dedicated website for healthcare professionals (clinical geneticists, genetic counselors, GPs, midwives) providing professional reference content, training resources, and patient handouts in the field of clinical genetics.
• Erfolijn (heredity helpline) Email and telephone helpline where members of the public and patients can submit questions about heredity, genetics, and hereditary conditions and receive responses from Erfocentrum staff.
• Keuzehulpen (Decision Aids) Decision aids designed to help patients and families make informed choices about genetic testing, screening, and related healthcare decisions. Used by patients directly and by healthcare professionals during consultations.
• Brochures on hereditary conditions Printed informational brochures on hereditary diseases, distributed free of charge to patients and healthcare providers to support education and counselling conversations.
• Educational films and animations Educational films and animations explaining hereditary conditions and genetic concepts to the general public, distributed through Erfocentrum's websites and YouTube channel.
• Genetic counselor training Training sessions delivered by Erfocentrum to genetic counselors and other healthcare professionals, covering patient communication, use of decision aids, and updated hereditary disease information.

Quantifiable outcome

• Information updated every 5 years for existing texts; new texts, pictures, films, and animations added annually

Named customers3 records

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

16 partnerships are on record, tiered core and minor.

• VKGN (Vereniging Klinische Genetica Nederland)coreStrategic or Co-development PartnerVKGN information letters on hereditary and congenital conditions are used as source material for disease texts on erfelijkheid.nl. Erfocentrum also works with VKGN on projects and communication materials.
• UMCNL (Universitair Medisch Centra Nederland)coreStrategic or Co-development PartnerUMCs contribute to the Erfocentrum's funding. The Erfocentrum works with university medical centers on projects and develops information materials in collaboration with clinical genetics departments.
• ZonMwcoreStrategic or Co-development PartnerErfocentrum participates in publicly funded research projects with ZonMw, including the PSIDER-Heart project (2022-2026) on gene therapy for inherited cardiomyopathies.
• Patiëntenfederatie NederlandminorStrategic or Co-development PartnerCollaboration with Patiëntenfederatie Nederland on projects around heredity and health information.
• RIVMminorStrategic or Co-development PartnerCollaboration with RIVM (National Institute for Public Health and the Environment) on hereditary health information projects.
• Hogeschool LeidenminorStrategic or Co-development PartnerErfocentrum participated in the 'Check de test' project led by Hogeschool Leiden, researching DNA home tests. Developed informational materials and published interviews on DNA home testing.
• VSOP (Patiëntenkoepel voor Zeldzame en Genetische Aandoeningen)coreStrategic or Co-development PartnerThe Erfocentrum originated from the VSOP. Between 1979 and 2000, the VSOP provided information on heredity. With the founding of the Erfocentrum in 2000, independent information provision became the task of the Erfocentrum. The VSOP focuses on (international) policy influence and advocacy.
• Diabetes FondsminorStrategic or Co-development PartnerThe Diabetes Fonds financed a project in 2018 that adapted texts about MODY (hereditary diabetes). The Erfocentrum also collaborated on a quiz about hereditary diabetes and contributed to online texts and brochures about family communication in hereditary forms of diabetes.
• NFK (Nederlandse Kankerbestrijding / NFK)minorStrategic or Co-development PartnerTexts on 'Family communication about hereditary cancer predisposition' were developed in collaboration with NFK and funded by KWF Kankerbestrijding.
• Hubrecht InstituteminorStrategic or Co-development PartnerPartner in the PSIDER-Heart project (2022-2026), a collaboration on prime and base editing gene therapy for inherited cardiomyopathies. Erfocentrum developed project description and a 'praatplaat' (conversation illustration) used in stakeholder interviews.
• Nederlands HartinstituutminorStrategic or Co-development PartnerPartner in the PSIDER-Heart project on gene therapy for inherited heart muscle diseases.
• Stichting Genetische Hartspierziekte PLNminorStrategic or Co-development PartnerPartner in the PSIDER-Heart project focused on gene therapy for PLN hereditary cardiomyopathy.
• NCFS (Nederlands Centrum voor Fylysche Stoff Ionen)minorStrategic or Co-development PartnerCollaboration on interviews for the 'Early Detection of Rare Diseases' project, specifically around metabolic diseases.
• VKS (Volwassenen en Kinderen met Stofwisselingsziekten)minorStrategic or Co-development PartnerCollaboration on interviews for the 'Early Detection of Rare Diseases' project, around storage diseases.
• Duchenne Parents ProjectminorStrategic or Co-development PartnerCollaboration on interviews for the 'Early Detection of Rare Diseases' project, around Duchenne muscular dystrophy.
• VED (Vereniging Ehlers-Danlos Syndromen)minorStrategic or Co-development PartnerCollaboration on interviews for the 'Early Detection of Rare Diseases' project, around Ehlers-Danlos syndromes.

Scale indicators3 records

Recent moves7 records

Expansion highlights3 records

Direct peers

• NIH GARD (Genetic and Rare Diseases Information Center): NCATS/NIH-operated information center providing plain-language answers on rare and genetic diseases for patients, families, and advocates. Closely mirrors Erfocentrum's mission and audience model (public + patient + professional) under US federal auspices.
• VSOP (Patiëntenkoepel voor Zeldzame en Genetische Aandoeningen): Dutch patient umbrella for rare and genetic conditions from which Erfocentrum originated in 2000. Now focused on policy and advocacy rather than information delivery, but historically and structurally comparable as a Dutch genetics/rare-disease stakeholder.
• Orphanet: French-originated, EU-wide reference portal for rare diseases and orphan drugs, providing encyclopedic disease descriptions, expert resources, and patient-information summaries. Directly comparable to Erfocentrum's rare-disease content (uniek-erfelijk.nl) but operating across many countries and languages.
• GeneReviews: University of Washington-hosted, peer-reviewed expert-authored descriptions of specific hereditary conditions aimed at clinicians and patients. Comparable to Erfocentrum's disease-specific texts but skewed toward clinical professionals and English-language global audiences.
• NHS — Genetics conditions: UK National Health Service public-information portal on genetics, heredity, genetic testing, and inherited conditions. Comparable as a publicly funded, public-facing genetics information site for the general population, written in plain language.
• MedlinePlus Genetics: US National Library of Medicine's public-facing genetics portal offering consumer-oriented information on hereditary conditions, genes, and chromosomes. Directly comparable as a publicly funded, independent, plain-language genetic health-information resource for the general public.

Regional players

• EURORDIS — Rare Diseases Europe: European-level alliance of rare-disease patient organizations advocating and producing patient-facing resources across EU member states. Comparable as a higher-tier supranational information/advocacy entity in the same rare-disease and hereditary-condition space where Erfocentrum operates.

Others

• RIVM (National Institute for Public Health and the Environment): Dutch government institute providing public-health information, screening programs, and population-level data. Comparable as a publicly funded Dutch health-information provider and a documented Erfocentrum partner on hereditary-health projects.
• VKGN (Vereniging Klinische Genetica Nederland): Dutch professional association for clinical genetics; Erfocentrum's source of VKGN information letters and a co-development partner. Comparable ecosystem participant but representing medical professionals rather than the public.
• Patiëntenfederatie Nederland: Umbrella organization representing Dutch patients across conditions, providing health-information and patient-experience resources. Overlaps with Erfocentrum's public-information role but operates across all conditions rather than genetics specifically.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks7 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/@Erfocentrum
• Facebookfacebook.com/61557999463220
• LinkedInlinkedin.com/company/erfocentrum
• Instagraminstagram.com/wijzeroverjedna

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 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 Erfocentrum