Spierziekten Nederland

What Spierziekten Nederland does

Spierziekten Nederland is a Dutch non-profit patient association founded in 1967 that represents approximately 200,000 people in the Netherlands living with one of ~600 known neuromuscular diseases. The organization is operated by a professional staff of ~25 people (15 FTE) supported by ~150 volunteers who are personally affected by neuromuscular disease. Its mission is to advocate for barrier-free access to care, medicines, and assistive devices, and to provide information, peer support, and practical resources to its ~14,000 members and followers. Governance is exercised by members through the General Members' Meeting (ALV), which approves policy and ratifies the budget and board appointments; the organization holds ANBI (Public Benefit Organization) status.

The association's product surface centers on a digital ecosystem comprising three integrated platforms: the public website (spierziekten.nl) hosting the Spierziekten A-Z database covering all ~600 neuromuscular diseases; the Mijn Spierziekten member portal (mijn-gegevens.spierziekten.nl) using OAuth2-based authentication for personalized access; and Myocafé, an online community platform with 6,500+ participants and 62,500+ comments that connects members via diagnosis-specific and regional groups. Additional resources include the Zorgwijzer (care guide), Hulpmiddelenoverzicht (assistive devices overview), downloadable SOS cards for emergency care, webshop merchandise, and regular webinars. Annual in-person events include the Spierziektedag (1,400+ attendees in 2025) and diagnosis-specific family days.

The business model combines annual membership fees (€45 for full members with closed-group and voting rights; €30 for subscribers with open-group access; free followers), tax-deductible donations and legacies enabled by ANBI status, webshop sales, and material institutional funding from Prinses Beatrix Spierfonds and Spieren voor Spieren — the latter two funding research, diagnostics, and specific programs such as the €1.4M Leefstijl op Maat lifestyle initiative. The association distributes its services primarily through its own digital channels and events, and partners internationally with ENMC, FSHD Europe, and SMA Europe, while nationally affiliating with Patiëntenfederatie Nederland, Ieder(in), VSOP, and Het Patiëntenhuis. No AI/ML capabilities are documented in the operating stack.

Name

Spierziekten Nederland

Legal name

Vereniging Spierziekten Nederland

Website

https://spierziekten.nl

Company type

Private

Founded year

1967

Operating status

Operating

Headcount range

11–50 employees

Short description

Spierziekten Nederland is a Dutch non-profit patient association founded in 1967 that advocates for and supports the ~200,000 people in the Netherlands living with one of ~600 neuromuscular diseases, serving ~14,000 members and followers through information, peer community, and policy advocacy.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

Keywords

• Patient advocacy services
• Neuromuscular disease support
• Peer community platform
• Healthcare information services
• Non-profit association

Headquarters

HQ city

Baarn

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, Others

Revenue model

1. Membership fees: Members pay an annual fee (€45.00 per year). Subscribers pay €30.00 per year. Followers have free access. Membership runs until the end of the calendar year and renews annually.
2. Donations and legacies: Spierziekten Nederland accepts one-time and recurring donations. Donations are tax-deductible thanks to the organization's ANBI (Public Benefit Organization) status. Bequests and legacies are also accepted without inheritance tax.
3. Financial support from Spierfonds and Spieren voor Spieren: Spierziekten Nederland receives financial support from the Prinses Beatrix Spierfonds and Spieren voor Spieren, which fund scientific research, diagnostics, and innovative treatments. This financial backing enables the association to carry out its work for people with neuromuscular diseases.
4. Webshop sales: The organization operates a webwinkel (web shop) selling merchandise including books such as 'De drempel over', SOS cards, alert cards, and other informational materials.

Pricing tiers

Go-to-market motion2 records

Distribution channels5 records

Marketing channels8 records

Core offering

Spierziekten Nederland is the Dutch nationwide patient association for people with neuromuscular diseases, representing approximately 200,000 individuals across some 600 known conditions. It delivers reliable disease information, peer community support through the Myocafé online community, practical tools (Zorgwijzer care guide, Hulpmiddelenoverzicht assistive devices overview, SOS/alert emergency cards), and structured policy advocacy for barrier-free access to care, medicines, and assistive devices. The association is funded by membership fees, donations, and financial support from partner organizations such as Prinses Beatrix Spierfonds and Spieren voor Spieren.

Differentiator

Problem solved

Functional benefit

Brands

• Myocafé: Online community platform for members to exchange experiences, ask questions and connect with others with muscle diseases
• Mijn Spierziekten
• Kadercafé

Products and services

• Membership (Lidmaatschap) Annual membership tier (€45 per year) for individuals with a neuromuscular disease and their relatives, providing access to the Myocafé online community (open and closed/regional groups), diagnosis-specific pages, the Kadercafé, the personalized member portal, and voting rights in the general members' meeting (ALV).
• Subscription (Abonnement) Lower-priced annual subscription (€30 per year) providing access to open public Myocafé groups and general Spierziekten news, but not to closed diagnosis-specific or regional groups.

Quantifiable outcome

• ~200,000 people with a neuromuscular disease in the Netherlands benefit from the association's advocacy for barrier-free access to care, medicines, and assistive devices.
• +3 more outcomes

Named customers2 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

Feature5 records

Partnerships

13 partnerships are on record, tiered core and minor.

• Spierziekten Centrum NederlandcoreStrategic or Co-development PartnerSpierziekten Centrum Nederland is a key collaborative partner in the neuromuscular disease field. The two organizations work together on research, information dissemination, and care improvement for people with neuromuscular diseases.
• ALS CentrumcoreStrategic or Co-development PartnerSpierziekten Nederland works closely with the ALS Centrum (ALS Center) in the Netherlands on advocacy, research, and information sharing for people with ALS.
• ALS PatiëntenverenigingminorStrategic or Co-development PartnerCollaboration with the Dutch ALS Patients' Association on shared advocacy goals and research prioritization for ALS patients.
• Stichting Life4HSPminorStrategic or Co-development PartnerSpierziekten Nederland collaborates with Stichting Life4HSP, which focuses on hereditary spastic paraplegia (HSP), one of the neuromuscular diseases represented within the broader association.
• ENMC (European Neuromuscular Centre)coreStrategic or Co-development PartnerENMC is an international organization focused on neuromuscular disease research. Spierziekten Nederland is internationally connected to ENMC and participates in European research and policy initiatives for neuromuscular diseases.
• FSHD EuropeminorStrategic or Co-development PartnerFSHD Europe is the European network for facioscapulohumeral muscular dystrophy (FSHD). Spierziekten Nederland collaborates internationally with FSHD Europe on research and advocacy.
• SMA EuropeminorStrategic or Co-development PartnerSMA Europe is the European alliance for spinal muscular atrophy (SMA). Spierziekten Nederland collaborates internationally with SMA Europe on SMA research and treatment access advocacy.
• Patiëntenfederatie NederlandcoreStrategic or Co-development PartnerSpierziekten Nederland is affiliated with Patiëntenfederatie Nederland (Patient Federation Netherlands), a national umbrella organization representing patient interests in Dutch healthcare policy.
• Ieder(in)coreStrategic or Co-development PartnerSpierziekten Nederland is affiliated with Ieder(in), a Dutch umbrella organization for people with disabilities and chronic illnesses, which represents patient interests in national policy discussions.
• VSOPcoreStrategic or Co-development PartnerSpierziekten Nederland is affiliated with VSOP, the Dutch umbrella organization for rare and genetic diseases, which focuses on rare disease policy and research.
• Het PatiëntenhuisminorStrategic or Co-development PartnerSpierziekten Nederland is part of Het Patiëntenhuis (The Patient House), a collaboration of various patient associations working together with INVOLV, Patiëntenfederatie Nederland, and Mind to prepare patient representatives and firmly anchor the patient voice in regional healthcare planning.
• Dutch Neuromuscular Expertise Centers and Rehabilitation SpecialistscoreStrategic or Co-development PartnerSpierziekten Nederland works closely with specialists from neuromuscular expertise centers and rehabilitation physicians to produce reliable patient information, stay current with medical developments, and stimulate research and innovation from the patient perspective.
• Dutch government bodies (Ministry of VWS, Zorginstituut Nederland, NZa, VNG)coreOthersSpierziekten Nederland regularly engages with government bodies including the Ministry of Health, Welfare and Sport (VWS), Zorginstituut Nederland, the Dutch Healthcare Authority (NZa), and the Association of Netherlands Municipalities (VNG) to advocate for accessible care, medicines, and assistive devices for people with neuromuscular diseases.

Scale indicators7 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• VSOP: Dutch umbrella organization for rare and genetic diseases. Comparable patient-advocacy model, affiliated with Spierziekten Nederland, and relevant as a peer for rare-disease policy and research representation.
• Spieren voor Spieren: Dutch foundation focused on defeating neuromuscular diseases in children through sports-based fundraising. Comparable neuromuscular mission, core financial partner of Spierziekten Nederland, and shared target population.
• Prinses Beatrix Spierfonds (Spierfonds): Dutch foundation funding neuromuscular disease research and a core financial partner of Spierziekten Nederland. Comparable mission focus on neuromuscular diseases, complementary roles (research funder vs. patient association), and shared partners and beneficiaries.
• European Neuromuscular Centre (ENMC): International organization focused on neuromuscular disease research with strong Dutch ties. Comparable neuromuscular focus, international scope, and shared partners; Spierziekten Nederland participates in ENMC initiatives.
• ALS Patiëntenvereniging: Dutch patient organization specifically for ALS. Comparable patient-association model in the same neuromuscular space, although narrower in disease scope; collaborates with Spierziekten Nederland on shared advocacy.
• Spierziekten Centrum Nederland: Dutch neuromuscular clinical and research center collaborating closely with Spierziekten Nederland. Comparable neuromuscular focus and shared ecosystem of expertise centers, patients, and research.

Broad incumbents

• Patiëntenfederatie Nederland: National umbrella organization representing Dutch patient interests. A larger, broader incumbent that Spierziekten Nederland is affiliated with; comparable patient-advocacy function but across all conditions rather than a single disease area.
• Muscular Dystrophy UK: UK charity supporting people with muscular dystrophy and related neuromuscular conditions. The closest international peer in mission and structure (information, advocacy, community, research funding) and a useful comparator for governance and revenue model.
• Ieder(in): Dutch umbrella for people with disabilities and chronic illnesses. Affiliated with Spierziekten Nederland and comparable in its national policy-advocacy role, though with a much broader constituency.
• Muscular Dystrophy Association (MDA): US nonprofit serving people with muscular dystrophy, ALS, and related neuromuscular diseases. Comparable comprehensive model — research, advocacy, clinical care, and community — at much larger scale; a relevant benchmark for Spierziekten Nederland's potential service-line expansion.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks4 records

Key highlights6 records

Customer concentration

• YouTubeyoutube.com/user/spierziekten
• Facebookfacebook.com/SpierziektenNederland
• LinkedInlinkedin.com/company/spierziekten-nederland
• Instagraminstagram.com/spierziekten

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

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 Spierziekten Nederland