HuntingtonNet

What HuntingtonNet does

Huntington Nederland (operating as HuntingtonNet / HKNN) is a Dutch non-profit knowledge network (kennisnetwerk) and association (vereniging) specializing in Huntington's disease, headquartered in The Hague with approximately 8 employees. Founded in 2020, the organization functions as the centralized national hub for Huntington-related clinical guidelines, research, training, and care coordination across the Netherlands, serving a small but high-complexity patient population. Its core platform consolidates a freely accessible Kennisbank (Knowledge Bank) of clinical guidelines, the LVHC Onderzoeksbibliotheek research library, discipline-specific Vakgroepen (professional working groups), structured care programs (Polikliniek voor diagnostiek en behandeling, Zeer intensieve zorg en behandeling), and a Huntington Support mobile app for caregivers and families. Supporting assets include the "Leven met Huntington" podcast, the "Huntington Partner in Balans" online support program, and a structured learning curriculum (Leerlijn Zorgprofessional) for healthcare professionals.

The organization monetizes primarily through membership fees from individuals and organizations in the Dutch healthcare sector, supplemented by training and professional development programs (basic training, communication training, swallowing/nutrition modules, Moreel Beraad / ethical deliberation). Distribution is delivered through the website, a LinkedIn presence, newsletters, recurring network days (Landelijke Netwerkdag), Huntington Café events, and webinars. Go-to-market is community-led and event-driven rather than sales-led, with direct engagement of recognized regional expertise centers and major long-term care providers including Topaz, Atlant, Mijzo, Amstelring, Land van Horne, Noorderbreedte, RadboudUMC, LUMC, and MUMC+.

Strategically, the network is integrated into the LVHC federation of seven low-volume, high-complexity expert networks (alongside D-ZEP, LBS, MS+, Korsakov, GP+, and NAH+) and maintains a knowledge relationship with the European Huntington's Disease Network (EHDN), which has translated EHDN physiotherapy guidelines into Dutch clinical resources. The Huntington Support platform (huntington-support.eu) extends reach to families via an expert finder. There is no disclosed revenue, no funding rounds, no M&A activity, and no named leadership in the source material. The entity operates on ANBI (Dutch public benefit) status and is positioned as a quasi-public utility within the Dutch rare-disease care infrastructure.

Name

HuntingtonNet

Legal name

Huntington Nederland

Website

https://hknn.nl

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Huntington Nederland (HKNN) is a Dutch non-profit knowledge network operating the national hub for Huntington's disease information, training, and care coordination, serving healthcare professionals, researchers, and families across the Netherlands through its Kennisbank, research library, care programs, and community events.

Ownership category

akta.pro rank

Product category

Healthcare Knowledge Network

NAICS

Other Individual and Family Services (624190)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Hospital Shared Services, GPOs & System Support Organizations (HLAFAAAO)

Keywords

• Rare disease knowledge network
• Healthcare professional education
• Clinical care guidelines
• Medical research library
• Caregiver support services

Headquarters

HQ city

Netherlands

HQ country

Netherlands

HQ region

Europe

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Membership fees: Huntington Nederland operates as a professional association (Vereniging) offering membership to individuals and organizations. The membership section suggests subscription-based contributions from member organizations and individuals in the healthcare sector.
2. Training and education services: Professional development programs including basistraining (basic training), communication training, swallowing and nutrition modules, and ethical deliberation (Moreel Beraad) training for healthcare professionals.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels6 records

Core offering

HuntingtonNet operates as the national Dutch knowledge network for Huntington's disease, providing a centralized knowledge bank (Kennisbank), LVHC research library, structured care programs, and professional training curriculum for healthcare professionals. The organization supports families and caregivers through the Huntington Support app, online support programs (Huntington Partner in Balans), and community events (Huntington Café), while coordinating a network of recognized expertise centers, university medical centers, and specialized care facilities across the Netherlands.

Product overview

HuntingtonNet operates as a unified knowledge network dedicated to Huntington's disease, consisting of multiple interconnected products and services. The core offering is the Huntington Kennisnet Nederland platform, which serves as the central hub. Supporting this are the Kennisbank (Knowledge Bank) for freely accessible information, the Onderzoeksbibliotheek LVHC research library, and the Huntington Podcast for public education. For professional development, the Leerlijn Zorgprofessional provides structured training modules. For patient care, the organization offers care programs including the Polikliniek voor diagnostiek en behandeling (outpatient clinic) and Zeer intensieve zorg en behandeling (intensive care) programs. Digital support is provided through the Huntington Support App and the Huntington Partner in Balans online support program. These products collectively serve healthcare professionals, researchers, patients, and family members across the Huntington care continuum.

Differentiator

Problem solved

Functional benefit

Brands

• Huntington Support App: Mobile application providing information about Huntington's disease within reach
• Huntington Podcast
• Onderzoeksbibliotheek LVHC
• Huntington Kennisnet

Products and services

• Huntington Kennisnet Nederland (Core Knowledge Network Platform)

Quantifiable outcome

• Regular network days connecting researchers and care professionals with research updates
• +1 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles3 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Five partnerships are on record, tiered core and major.

• LVHC (Laag Volume Hoog Complex) ExpertisenetwerkencoreStrategic or Co-development PartnerHuntington Nederland participates in the LVHC network of seven expert networks for low-volume, high-complexity care. The LVHC Onderzoeksbibliotheek (Research Library) serves as a central knowledge hub where Huntington research is aggregated alongside research from D-ZEP, LBS, MS+, Korsakov, GP+, and NAH+ networks. This collaboration enables knowledge sharing across rare disease areas and supports researchers, clinicians, and policy makers.
• European Huntington's Disease Network (EHDN)coreStrategic or Co-development PartnerEHDN has developed clinical guidelines and physiotherapist guidelines that are integrated into Huntington Nederland's knowledge resources. Guidelines on walking aids, movement and handling, footwear and orthotics, and physical activity are published through the Dutch network.
• Huntington Support (huntington-support.eu)coreStrategic or Co-development PartnerHuntington Support is referenced as a platform for specialized assistance and expert finder for caregivers and families. The platform provides a directory of experts and connects families with appropriate care resources.
• Regional Expertise CenterscoreStrategic or Co-development PartnerNetwork of recognized regional expertise centers providing specialized Huntington's disease care throughout the Netherlands. When home care is no longer possible, patients transition to nursing homes affiliated with these regional centers.
• Care Facility PartnersmajorOthersMultiple care facilities actively participate in Huntington Nederland's knowledge network and research activities: Amstelring, Atlant, Land van Horne, LUMC, Mijzo, MUMC+, Noorderbreedte, RadboudUMC, Topaz, TRANZO, and Universiteit Maastricht. These organizations host network days, conduct research, and implement care programs.

Scale indicators2 records

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• European Huntington's Disease Network (EHDN): Pan-European professional and research network for Huntington's disease that already feeds guidelines into HKNN; comparable mission of coordinating research and clinical knowledge but operating at a much larger geographic scale.
• Alzheimer Nederland: Dutch national non-profit for dementia/Alzheimer's that combines patient support, professional education, research funding, and advocacy; a much larger scale disease-specific knowledge and support organization with overlapping programs.
• International Huntington Association: Federation of national Huntington's disease associations focused on advocacy, knowledge exchange, and family support across member countries; broader geographic scope but same disease-specific nonprofit mission.

Direct peers

• Huntington's Disease Association (UK): UK charity providing information, support, and professional resources for Huntington's families and clinicians; structurally similar disease-specific knowledge/support organization in a single national market.
• Huntington's Disease Society of America (HDSA): U.S. non-profit supporting people affected by Huntington's disease through research, education, advocacy, and community services; directly comparable mission and product mix (research funding, family services, professional education).
• ParkinsonNet: Dutch national knowledge and professional network for Parkinson's disease, structured very similarly to Huntington Nederland with regional expertise centers, professional working groups, training programs, and care guidelines; the closest structural analog in the Netherlands.

Emerging players

• Huntington Support (huntington-support.eu): European online expert finder and resource platform for Huntington families and caregivers that is explicitly referenced as a Huntington Nederland partner; comparable target audience (patients and families) with adjacent digital toolset.
• Dementie Netwerk Zuidoost-Nederland (D-ZEP): Dutch regional expertise network for young-onset dementia, another LVHC partner; shares the rare/neurological disease knowledge-network model, research library integration, and multi-disciplinary working-group approach.
• Korsakov Kennisnet (LVHC): Dutch knowledge network for Korsakov syndrome that sits alongside HKNN within the LVHC umbrella; comparable low-volume, high-complexity disease model, knowledge bank structure, and partner-care-facility engagement.

Others

• European Reference Network for Rare Neurological Diseases (ERN-RND): European-level coordinating network for rare neurological disease expertise, including Huntington's; comparable in role as a knowledge/reference network for clinicians, but operating as a policy/coordination layer rather than a member association.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/huntingtonkennisnet

Revenue estimate

Valuation estimate

Number of profiles

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 HuntingtonNet