Stichting Nederlands Netwerk voor Lymfoedeem en Lipoedeem (NLNet)

What Stichting Nederlands Netwerk voor Lymfoedeem en Lipoedeem (NLNet) does

Stichting Nederlands Netwerk voor Lymfoedeem en Lipoedeem (NLNet) is a Dutch nonprofit patient organization founded in 2006, serving people in the Netherlands with lymphedema and/or lipoedeem and their relatives, along with healthcare professionals (therapists, dermatologists, physiotherapists, skin therapists) and compression-aid manufacturers. The organization addresses the lack of recognition, delayed diagnosis, and inadequate care for these conditions through peer support, evidence-based information, and advocacy with policymakers, health insurers, and politicians. It is ANBI-registered, making donations tax-deductible, and is governed by a volunteer board with a small paid bureau of approximately 16 staff.

NLNet's core products and services are community- and information-focused rather than technology-based. Principal offerings include the biannual Lymfologica membership magazine, eleven regional support groups active across all Dutch provinces, a Jongerenplatform (youth platform for ages 14-35), national congresses and symposia, webinars, a podcast series, YouTube content, and patient experience stories. Educational resources include the Module Compressiehulpmiddelenzorg (a collaborative prescription standard for compression aids) and compressionineurope.org, a multilingual information portal available in 10+ languages. The technology stack is limited to a WordPress-based website (lymfoedeem.nl), email/newsletter tools, and standard digital media platforms.

NLNet's revenue model rests on three pillars: recurring annual membership fees (€40/year for patients, €35 with direct debit; €60/year for healthcare professionals, €55 with direct debit), tiered corporate sponsorships (Platinum, Gold, Silver, Bronze) from compression-aid manufacturers and healthcare companies, and tax-deductible donations and bequests under ANBI status. The go-to-market is community-led, recruiting members via the website, word-of-mouth, support groups, regional meetings, congresses, and newsletters, and acquiring sponsors through personal outreach. Headcount is 16 employees; the organization is otherwise volunteer-driven, with the stated addressable population in the Netherlands exceeding 350,000 patients.

Name

Stichting Nederlands Netwerk voor Lymfoedeem en Lipoedeem (NLNet)

Legal name

Stichting Nederlands Netwerk voor Lymfoedeem & Lipoedeem

Website

https://lymfoedeem.nl

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

11–50 employees

Short description

NLNet is a Dutch nonprofit patient organization, founded in 2006, that serves people with lymphedema and lipoedeem, their families, and healthcare professionals through regional support groups, advocacy, and educational resources.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Chronic Condition Support Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190)

SIC

Services-Misc Health & Allied Services, Nec (8090), Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

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

Keywords

• Patient advocacy services
• Chronic condition support
• Peer support groups
• Health information publishing
• Lymphedema lipedema resources

Headquarters

HQ city

Amersfoort

HQ country

Netherlands

HQ region

Europe

Offices3 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership/Donations: NLNet generates revenue primarily through annual membership fees paid by patients and healthcare professionals. Patients pay €40/year (or €35 via direct debit); professionals pay €60/year. Members receive the bi-annual magazine Lymfologica and access to events.
2. Sponsorships: Corporate sponsors (compression aid manufacturers and healthcare companies) support NLNet financially at various tiers (Platinum, Gold, Silver, Bronze). Sponsors receive visibility on the website, at congresses, and in the magazine. New sponsors like Lipology Clinic have joined in 2026.
3. Donations and bequests: NLNet accepts donations and bequests from supporters. The organization holds ANBI (Public Benefit Organization) status, making donations tax-deductible.

Pricing tiers

Go-to-market motion1 record

Distribution channels6 records

Marketing channels10 records

Core offering

NLNet is a Dutch nationwide patient organization that provides information, peer support, and advocacy for people living with lymphedema and/or lipoedeem and their families. Its core paid offering is annual membership (€40 patients, €60 professionals), which includes the bi-annual Lymfologica magazine, access to regional support groups, youth platform, congresses, and webinars. The organization also runs the Jongerenplatform youth community, the Module Compressiehulpmiddelenzorg initiative, the compressionineurope.org information portal, and a podcast series, and is funded additionally through corporate sponsorships and tax-deductible donations under ANBI status.

Product overview

NLNet is a Dutch patient organization offering a portfolio of information services, community platforms, and educational resources for people affected by lymphedema and lipedema. The core offerings include the Lymfologica biannual magazine, regional support groups, and the Jongerenplatform youth platform. NLNet also provides specialized educational resources through the Module Compressiehulpmiddelenzorg and the compressionineurope.org information portal, plus audio content via podcasts. The organization functions primarily as an information and community hub rather than a technology product company.

Differentiator

Problem solved

Functional benefit

Products and services

• Lymfologica Membership Magazine A bi-annual membership magazine published by NLNet for members and sponsors, containing tips, patient stories, professional interviews, news, and research updates on lymphedema and lipoedeem. Provided free with paid annual membership.
• Jongerenplatform (Youth Platform) A dedicated community platform for young people (ages 14-35) with lymphedema or lipoedeem, offering peer support, workshops (e.g., needle felting with alpaca wool), weekend events, and escaperoom activities, organized by six young members of NLNet.
• Support Groups (Supportgroepen) Eleven regional peer support groups active across all Dutch provinces where patients and healthcare providers meet, exchange information, and share experiences under professional guidance. Each group holds 1-2 meetings per year, coordinated by regional volunteers.
• Module Compressiehulpmiddelenzorg (Compression Aids Module) A collaborative initiative involving healthcare providers, suppliers, health insurers, and NLNet to ensure correct prescription of compression aids. Includes a patient information film, guide, flowchart, and toolbox with posters and brochures.
• compressionineurope.org Information Portal A multilingual information website available in 10+ languages providing information about compression aids types, measurement tips, maintenance advice, and educational content about lymphedema and lipedema conditions.
• Podcasts Lipoedeem en Lymfoedeem A podcast series produced in collaboration with NLNet, featuring episodes by De Vragendokter (house doctor Johanneke) covering recognition, symptoms, treatment options, and daily life impact of lipedema and lymphedema.

Quantifiable outcome

• 11 regional support groups operating across all provinces of the Netherlands, serving as a nationwide peer support network.
• +4 more outcomes

Named customers3 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

20 partnerships are on record, tiered minor, founding and core.

• Lipology ClinicminorGTM or Marketing Partner · 1 May 2026Lipology Clinic, a specialized lipoedeem and tumescent liposuction clinic in the Netherlands, became a sponsor of NLNet in May 2026. The clinic specializes in safe, personal care for people with lipoedeem and supports NLNet's mission.
• BorstkankerVereniging Nederland (BVN)foundingStrategic or Co-development Partner · 1 January 2006BVN was one of the founding organizations of NLNet in 2006, alongside patient representatives, Stichting Olijf, NVFL, NVH, SLCN, and business representatives. BVN contributed to the initial establishment and mission of NLNet.
• Stichting OlijffoundingStrategic or Co-development Partner · 1 January 2006Stichting Olijf (for gynecological cancer patients) was a co-founder of NLNet in 2006, contributing to the establishment of the national network.
• Nederlandse vereniging voor Fysiotherapie binnen de Lymfologie (NVFL)foundingStrategic or Co-development Partner · 1 January 2006NVFL (Dutch association for physiotherapy in lymphology) was a co-founder of NLNet in 2006 and continues to collaborate on guidelines, patient information, and professional education.
• Nederlandse Vereniging van Huidtherapeuten (NVH)foundingStrategic or Co-development Partner · 1 January 2006NVH (Dutch association of skin therapists) was a co-founder of NLNet in 2006 and collaborates on guidelines, the Module Compressiehulpmiddelenzorg, and patient care standards.
• Stichting Lymfologie Centrum Nederland (SLCN)foundingStrategic or Co-development Partner · 1 January 2006SLCN was a co-founder of NLNet in 2006, contributing expertise in lymphology and supporting the organization's mission to improve care for lymphedema and lipoedeem patients.
• Dutch Lymphoedema Framework (DLF)coreStrategic or Co-development PartnerNLNet is affiliated with the Dutch Lymphoedema Framework (DLF), a national body working to improve lymphedema care standards and coordination in the Netherlands.
• International Lymphoedema Framework (ILF)coreStrategic or Co-development PartnerNLNet is affiliated with the ILF, an international body working on lymphedema standards and guidelines. NLNet participates in ILF congresses (e.g., Nottingham 2023) and contributes to international guideline development.
• Health on the Net Foundation (HON)minorStrategic or Co-development PartnerNLNet's website is HON-certified, indicating adherence to the HONcode ethical standard for health and medical information websites.
• Huidpatiënten Nederland (HPN)minorStrategic or Co-development PartnerNLNet is a partner of Huidpatiënten Nederland (Dutch Skin Patients Association), collaborating on patient advocacy and information sharing.
• VASCERN (European Reference Network for Rare Vascular Diseases)coreStrategic or Co-development PartnerNLNet collaborates with VASCERN, the European Reference Network. Dr. Robert Damstra of ECL Drachten serves as chair of the VASCERN working group for primary and pediatric lymphedema. NLNet participates in this network for the benefit of Dutch patients.
• Expertisecentrum Lymfovasculaire Geneeskunde (ECL) / Nij Smellinghe, DrachtencoreStrategic or Co-development PartnerECL in Drachten is a nationally and internationally recognized expertise center for lymphedema and lipoedeem. NLNet collaborates with ECL on guidelines, patient information, research, and the development of the Module Compressiehulpmiddelenzorg. Key figures from ECL (Dr. Damstra, Lise Maren Kloosterman) are involved in NLNet activities and publications.
• Ronald McDonald Kinderfonds (Hoeve, Beetsterzwaag)minorStrategic or Co-development PartnerThe Ronald McDonald Hoeve near ECL in Beetsterzwaag provides accommodation for children with congenital lymphedema and their parents during treatment at ECL Drachten. The facility replicates a home environment with private rooms, kitchen, and play area.
• Juzpo (Juzo)minorGTM or Marketing PartnerJuzo is a compression aid manufacturer and Platinum sponsor of NLNet. Sponsors receive visibility on the website and at events.
• VAR (VARoderm)minorGTM or Marketing PartnerVAR (VARoderm) is a compression aid manufacturer and Platinum sponsor of NLNet.
• mediminorGTM or Marketing Partnermedi is a compression aid manufacturer and Gold sponsor of NLNet.
• Lohmann & RauscherminorGTM or Marketing PartnerLohmann & Rauscher (L+R) is a compression aid manufacturer and Gold sponsor of NLNet.
• ThuasneminorGTM or Marketing PartnerThuasne is a compression aid manufacturer and Gold sponsor of NLNet.
• Hanzehogeschool GroningenminorStrategic or Co-development PartnerTwo dietetics students from Hanzehogeschool Groningen (Anne Ram and Silke van Dijk) began a qualitative research project in 2023 on nutrition in relation to lipoedeem, supervised by Bea Koet and Lise Maren Kloosterman from ECL.
• Federatie Medisch Specialisten (FMS)coreStrategic or Co-development PartnerFMS coordinated the development of the Richtlijn Lymfoedeem 2024, providing funding and organizational support. The NVDV provided secretarial support, researchers, and a guidelines expert. NLNet participated as a patient representative in the 27-member committee.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• International Lymphoedema Framework (ILF): International organization dedicated to improving the management of lymphedema and related conditions. NLNet is an affiliated national framework; ILF is directly comparable as a coordinating body for lymphedema research, guidelines, and advocacy at the international level.
• Longfonds (Stichting Longfonds): Dutch patient organization for people with lung disease. Comparable as a Dutch disease-specific patient nonprofit with membership, sponsorships from healthcare companies, regional networks, and active fundraising — a well-established analog to NLNet's model.
• Huidpatiënten Nederland (HPN): Dutch skin patients association and listed partner of NLNet. Operates as a disease-area-specific patient federation with advocacy, information, and peer support — a closely comparable patient organization operating in an adjacent therapeutic area in the Netherlands.
• Stichting Olijf: Dutch patient organization for gynecological cancer and co-founder of NLNet in 2006. Runs a similar disease-specific patient advocacy model with peer support, information resources, and volunteer infrastructure, making it a directly comparable Dutch patient nonprofit.
• Lipedema Foundation: US-based nonprofit dedicated to advancing lymphedema and lipedema research, education, and awareness. Comparable as a disease-specific patient/research organization operating internationally, providing a benchmark for NLNet's potential expansion into research funding and advocacy.
• Lipoedema UK: UK-based patient organization dedicated to lipoedema. Directly comparable as a disease-specific patient advocacy group offering peer support, information resources, and awareness campaigns for the same patient population NLNet serves in the Netherlands.
• Lymphatic Education & Research Network (LE&RN): US-based nonprofit focused on lymphatic diseases including lymphedema. Directly comparable as a disease-specific patient advocacy and research organization with global reach, serving the same patient population as NLNet.
• BorstkankerVereniging Nederland (BVN): Dutch breast cancer patient organization and co-founder of NLNet in 2006. Operates as a disease-specific nonprofit patient advocacy body with membership, regional networks, and sponsorship from healthcare companies — directly comparable to NLNet's operating model.

Broad incumbents

• Patiëntenfederatie Nederland: Dutch umbrella organization representing ~200 patient organizations. Comparable as a broader-incumbent patient advocacy body that NLNet could align with for policy influence, and serves as a benchmark for how scaled Dutch patient advocacy operates.
• Diabetesvereniging Nederland (DVN): Largest Dutch disease-specific patient organization, focused on diabetes. Comparable as a broad-incumbent Dutch patient nonprofit with membership model, magazine, regional activities, and corporate sponsorship — illustrating a more scaled version of NLNet's structure.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/@NLNet-lymfoedeem-lipoedeem
• LinkedInlinkedin.com/company/netwerk-voor-lymfoedeem-en-lipoedeem-nlnet-

Revenue estimate

Valuation estimate

Number of profiles

Profiles6 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 Nederlands Netwerk voor Lymfoedeem en Lipoedeem (NLNet)