Nederlandse Paget patiënten vereniging

What Nederlandse Paget patiënten vereniging does

Nederlandse Paget patiënten vereniging is a Dutch nonprofit patient association (vereniging) dedicated to Paget's disease of bone, a chronic bone remodeling disorder. The organization serves Paget's disease patients and the medical professionals who diagnose and treat them, with the stated mission of reducing diagnostic delays by providing educational content in Dutch to both audiences and connecting patients with peers for mutual support (lotgenoten). Its core products and services include a patient information service, a physician information service, a peer support program (Lotgenoten contactdagen), a periodic members' magazine (Ledenblad), and downloadable educational resources — all delivered primarily through its website paget.nl, social media (Facebook and Twitter), and in-person events.

The underlying technology is minimal: a static-feeling informational website (some content visibly dated to 2014 and copyright 2015) with no app, no public API, no proprietary software, and no disclosed integrations. The association holds ANBI (Algemeen Nut Beogende Instelling) status under Dutch tax law and is formally affiliated with Ieder(in), a Dutch network for people with disabilities or chronic illnesses, which provides ecosystem legitimacy and access to broader advocacy infrastructure. It also maintains relationships with sister organizations (zusterorganisaties) internationally.

The business model is that of a small Dutch nonprofit association: revenue is not publicly disclosed and is presumed to derive from membership dues, donations, and possibly small subsidies, with ANBI status enabling tax-deductible giving. The organization operates with approximately 8 employees (per firmographics), has no disclosed institutional investment, no parent company, and is governed by a volunteer board. Customer segments are primarily Paget's disease patients (persona segment) with a secondary segment of medical professionals (general practitioners and specialists), and the segmentation approach is horizontal across the rare disease.

Name

Nederlandse Paget patiënten vereniging

Legal name

Nederlandse Paget patiënten vereniging

Website

https://paget.nl

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Nederlandse Paget patiënten vereniging is a Dutch nonprofit patient association that provides education, peer support, and physician outreach for Paget's disease of bone patients in the Netherlands. The organization operates under ANBI public benefit status and is affiliated with the Ieder(in) chronic illness network.

Ownership category

akta.pro rank

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales

Distribution channels1 record

Marketing channels6 records

Core offering

The Nederlandse Paget patiënten vereniging is a Dutch non-profit patient association that provides information and education about Paget's disease of bone to patients and physicians, and facilitates peer support connections among patients. It publishes a member magazine, organizes peer contact days and member meetings, and offers downloadable educational resources through its website.

Product overview

The Nederlandse Paget patiënten vereniging is a patient association dedicated to raising awareness about Paget's disease (a chronic bone condition). The organization provides information services to patients and doctors, facilitates peer support connections between patients (lotgenoten), publishes educational materials and a members magazine (Ledenblad), and organizes member activities including general meetings (Algemene leden vergadering) and peer contact days (Lotgenoten contactdagen). The organization operates under the Ieder(in) network for people with disabilities or chronic illnesses and holds ANBI public benefit organization status.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient Information Services Provides educational information about Paget's disease of bone for patients, including details on symptoms, diagnosis, treatment, and living with the condition. Targeted at individuals diagnosed with or at risk of Paget's disease.
• Physician Information Services Provides medical professionals with information about Paget's disease to support timely diagnosis and treatment. Targeted at general practitioners and specialists who encounter Paget's disease patients.
• Peer Support Program (Lotgenoten) Connects patients with Paget's disease with each other for mutual support and emotional assistance through peer contact days (Lotgenoten contactdagen) and related activities. Targeted at Paget's disease patients seeking peer connection.
• Members Magazine (Ledenblad) A periodic publication for members containing news, updates, and information related to Paget's disease and the association. Targeted at association members.
• Downloads and Links Resource Library Provides downloadable materials, educational resources, and external links related to Paget's disease. Targeted at both patients and medical professionals seeking reference materials.

Segments2 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Two partnerships are on record, tiered core and minor.

• Ieder(in)coreOthersAffiliated network organization for people with disabilities or chronic diseases. Ieder(in) is a Dutch network representing people with disabilities or chronic illnesses.
• ANBI (Algemeen Nut Beogende Instelling)minorOthersRegistered as a Public Benefit Organization (ANBI) under Dutch tax law, providing tax-deductible donation benefits for supporters.

Recent moves5 records

Expansion highlights2 records

Others

• Ieder(in): Dutch umbrella network representing people with disabilities and chronic illnesses. Direct affiliate of the Nederlandse Paget patiënten vereniging; comparable as an advocacy infrastructure provider amplifying the voice of small chronic-illness member associations.
• European Calcified Tissue Society (ECTS): European scientific society focused on bone and calcified tissue research, including Paget's disease. Comparable as an ecosystem participant in Paget's disease awareness and education, complementing patient-association efforts at the professional/research level.

Regional players

• Reumapatiëntenbond: Dutch patient association for rheumatism and related musculoskeletal conditions. Operates in the same Dutch chronic-bone-and-joint advocacy space, with comparable awareness, peer-support, and physician-education programming.
• Osteoporose Vereniging: Dutch patient association for osteoporosis, a related chronic bone condition. Operates in the same Dutch patient-advocacy ecosystem, serving a similar chronic-bone-disease population with awareness and peer-support services.

Broad incumbents

• National Osteoporosis Society (NOS, UK): UK charity addressing bone health including Paget's-related conditions. Comparable as a broader bone-health patient organization whose mission and methods (information, helpline, peer support) overlap with the Dutch Paget association.
• Patiëntenfederatie Nederland (formerly NPCF): The largest Dutch patient federation, cited in the association's news (NPCF campaign 2014). Broader incumbent that aggregates the interests of many disease-specific patient associations, including niche groups like Paget's.

Direct peers

• The Paget Association: UK-based charity dedicated to Paget's disease of bone, providing patient information, research funding, and professional education. Most direct international counterpart to the Nederlandse Paget patiënten vereniging in mission, services, and disease focus.
• Paget Foundation (US): US patient advocacy organization focused on Paget's disease of bone and related disorders. Comparable as a national patient association addressing the same rare condition, with similar awareness, education, and research-support functions.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks6 records

Key highlights6 records

Customer concentration

• Xx.com/Pagetvereniging
• Facebookfacebook.com/534889046527591
• LinkedInlinkedin.com/company/nederlandse-paget-pati%C3%ABnten-vereniging

Revenue estimate

Valuation estimate

Number of profiles

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Nederlandse Paget patiënten vereniging