Stichting WaihonaPedia

What Stichting WaihonaPedia does

Stichting WaihonaPedia is a Dutch non-profit foundation (stichting) established in 2016 and headquartered at the Jheronimus Academy of Data Science in 's-Hertogenbosch, Netherlands. The foundation develops and operates WaihonaPedia, a wiki-based online platform that supports patient organizations serving people with rare, often care-intensive conditions. The platform combines three integrated functions: a global Community Network connecting affected families, a Knowledge Base that gathers and preserves condition-specific information, and a Peer Connection Hub providing a safe moderated meeting place. According to disclosed scale metrics, the federation comprises 17 patient organizations across 34 countries with 542 active participants, covering 23 rare conditions and connected to 20 expert centres; content is delivered in 9 languages.

The platform is built on XWiki Enterprise open-source wiki software and offers collaborative editing, themed discussion rooms, and an expert Q&A system where questions are anonymized and verified answers are added to the database. The federation model is the core go-to-market: rare-disease patient organizations join the WaihonaPedia Federation, contribute knowledge and funds, and gain access to peer communities, expert networks, and accumulated content. Stichting WaihonaPedia does not sell subscriptions or seats to end users; the platform is provided free of charge to all participants worldwide. Operating revenue consists of contributions from national patient groups and government project grants (including the multi-year STAP-OP research project with Hogeschool Rotterdam, 2024-2027). The organization is led by Managing Director Rob de Back, with Prof. dr. Rob Heethaar as Chairman of the Board and Antoon Kuijpers as Board Member, supported primarily by volunteers including retired academics, parents, and caregivers.

Name

Stichting WaihonaPedia

Legal name

Stichting WaihonaPedia

Website

https://waihonapedia.org

Company type

Private

Founded year

2016

Operating status

Operating

Headcount range

1–10 employees

Short description

Stichting WaihonaPedia is a Dutch non-profit foundation that operates a free, multilingual, wiki-based online platform connecting 17 rare-disease patient organizations across 34 countries, supporting affected families, expert Q&A, and knowledge preservation.

Ownership category

akta.pro rank

Product category

Healthcare Community Platform

NAICS

Individual and Family Services (6241), Services for the Elderly and Persons with Disabilities (624120), Services for the Elderly and Persons with Disabilities (62412)

SIC

Services-Social Services (8300)

akta.pro primary industry

Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Rare disease platform
• Patient community network
• Collaborative knowledge sharing
• Nonprofit health foundation
• Open source wiki software

Headquarters

HQ city

's-hertogenbosch

HQ country

Netherlands

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Software

Cost components

Technology or R&D, Operations, Personnel, Infrastructure, Others

Revenue model

1. National Patient Group Contributions: The WaihonaPedia Foundation is funded by national groups around disorders who contribute the money needed to keep the platform available. Using this money, the foundation conducts activities to keep the platform working and resolve technical failures.
2. Government Project Grants: Revenue is obtained through projects often funded by the government (project grant) and by national groups around the disorders. This supports software development, innovation, and community activities.

Pricing tiers

Go-to-market motion1 record

Distribution channels1 record

Marketing channels6 records

Core offering

WaihonaPedia is a secure, multilingual online platform built on XWiki Enterprise that supports rare disease patient organizations in managing their communities. It provides a free environment for sharing medical and care information, organizing peer support, arranging contact with experts, and documenting accumulated knowledge and experiences across a federation of 17 patient organizations in 34 countries. The underlying software is developed as open source by the foundation and made available free of charge to participants worldwide in 9 languages.

Product overview

WaihonaPedia is a single, unified online platform built on XWiki Enterprise that supports patient organizations in managing communities for rare diseases. The platform offers three integrated core features: a global Community Network for connecting individuals affected by rare conditions, a Knowledge Base for gathering and preserving information, and a Peer Connection Hub for safe interaction. The organization operates through the Stichting WaihonaPedia Foundation, a Dutch non-profit entity based at the Jheronimus Academy of Data Science in 's-Hertogenbosch.

Differentiator

Problem solved

Functional benefit

Products and services

• WaihonaPedia Platform The WaihonaPedia Platform is a well-secured online platform built on XWiki Enterprise that supports patient organizations in managing their community for individuals with rare diseases and their families. It provides a safe environment for sharing information, organizing peer support, arranging contact with experts, and documenting accumulated knowledge and experience. The platform offers a global Community Network, a Knowledge Base for gathering and preserving information, and a Peer Connection Hub for safe interaction. It is accessible in 9 languages (English, Danish, German, Spanish, French, Italian, Dutch, Polish, Portuguese).

Quantifiable outcome

• 17 patient organization communities across 34 countries working together on 23 rare conditions

Named customers5 records

Segments3 records

Ideal customer profiles2 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

14 partnerships are on record, tiered core, major and minor.

• Jheronimus Academy of Data SciencecoreStrategic or Co-development PartnerThe foundation is based at the Jheronimus Academy of Data Science in 's-Hertogenbosch, Netherlands. This academic partnership supports the organization's data management and research capabilities for rare disease knowledge.
• Hogeschool Rotterdam (Hogeschool Rotterdam Kenniscentrum Zorginnovatie)coreStrategic or Co-development PartnerCollaboration on the STAP-OP research project studying transition care for young people with syndromes or complex conditions from pediatric to adult healthcare, running from 2024-2027.
• European Federation of Williams Syndrome (FEWS)majorStrategic or Co-development PartnerFEWS participates in Federatie WaihonaPedia, spreading knowledge and awareness of Williams syndrome through the platform and sharing resources across European member associations.
• expertisecentrum ENCORE TSC (Erasmus MC Rotterdam)coreStrategic or Co-development PartnerExpert centre for Tuberous Sclerosis Complex at Erasmus MC providing clinical care, research, and expert consultations for the TSC patient community.
• expertisecentrum TSC UMCU UtrechtcoreStrategic or Co-development PartnerExpert centre for Tuberous Sclerosis Complex at UMC Utrecht, one of the world's largest TSC outpatient clinics treating 500 adult patients, providing research and clinical expertise.
• Marshall Smith Syndrome Research FoundationmajorStrategic or Co-development PartnerUS-based patient organization for Marshall Smith Syndrome participating in WaihonaPedia federation for knowledge sharing and community support.
• Vereniging Cornelia de Lange SyndroommajorStrategic or Co-development PartnerDutch association for Cornelia de Lange syndrome participating in WaihonaPedia federation, organizing events and supporting families.
• Stichting Tubereuze Sclerosis NederlandmajorStrategic or Co-development PartnerDutch foundation for Tuberous Sclerosis Complex participating in WaihonaPedia federation, managing community events and expert networks.
• Stichting Kabuki SyndroommajorStrategic or Co-development PartnerDutch foundation for Kabuki syndrome participating in the WaihonaPedia community.
• Nederlandse Vereniging Williams Beuren SyndroommajorStrategic or Co-development PartnerDutch association for Williams Beuren Syndrome participating in WaihonaPedia federation.
• Vereniging Angelman Syndroom NederlandmajorStrategic or Co-development PartnerDutch association for Angelman Syndrome participating in WaihonaPedia federation.
• Stichting Rubinstein-Taybi SyndroommajorStrategic or Co-development PartnerDutch foundation for Rubinstein-Taybi Syndrome participating in WaihonaPedia federation.
• Kentalis Kenniscentrum DoofblindheidminorStrategic or Co-development PartnerKnowledge centre providing expertise on communication for people with combined visual and hearing impairments, contributing to understanding communication challenges in rare conditions.
• Amsterdam Expertise Centrum Ontwikkelingsstoornissen (AECO)minorStrategic or Co-development PartnerAmsterdam expertise centre for developmental disorders participating in research projects with WaihonaPedia.

Scale indicators5 records

Recent moves6 records

Expansion highlights4 records

Direct peers

• Orphanet: Orphanet is a European reference portal for rare diseases and orphan drugs, offering a comprehensive knowledge base of rare conditions, expert centres, and patient organizations — directly comparable to WaihonaPedia's rare-disease knowledge and community mission.
• RareConnect (EURORDIS): RareConnect is a EURORDIS-hosted moderated online community network connecting rare-disease patients and families across language boundaries, closely paralleling WaihonaPedia's federated community and multilingual peer-support approach.

Broad incumbents

• NORD (National Organization for Rare Disorders): NORD is a large US-based patient-advocacy umbrella for rare diseases providing information, advocacy, and community programs — overlaps with WaihonaPedia's information-sharing and patient-organization support mission at a much larger scale.
• PatientsLikeMe: PatientsLikeMe operates a large online patient community where members track conditions and share experiences; comparable to WaihonaPedia's peer-connection and patient-experience knowledge-sharing functionality, but at much broader scale.
• HealthUnlocked: HealthUnlocked provides condition-specific online patient communities and information libraries, paralleling WaihonaPedia's federated model of disease-specific communities with peer support and knowledge sharing.
• EURORDIS – Rare Diseases Europe: EURORDIS is a European federation of rare-disease patient organizations that convenes communities, produces policy work, and runs RareConnect — a broader-incumbent counterpart to WaihonaPedia's Dutch federation model.
• Inspire: Inspire runs a large online patient community platform hosting condition-specific support groups including rare-disease communities, comparable in technology and peer-support model to WaihonaPedia.
• MedlinePlus: MedlinePlus is the US National Library of Medicine's public health-information portal providing vetted disease and condition content, comparable to WaihonaPedia's curated knowledge-base role for rare-disease families.

Emerging players

• GenomeConnect: GenomeConnect is a patient-empowerment registry for individuals with rare genetic conditions enabling data sharing with researchers, similar in mission to WaihonaPedia's research collaboration with academic partners.
• MyGene2: MyGene2 is a research-focused platform connecting patients with rare genetic conditions to clinicians and other families, overlapping with WaihonaPedia's expert-Q&A and rare-condition knowledge-sharing for care-intensive syndromes.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks4 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/stichting-waihonapedia

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 WaihonaPedia