Hidradenitis Patiënten Vereniging

What Hidradenitis Patiënten Vereniging does

Hidradenitis Patiënten Vereniging (HPV) is a Dutch national patient organization serving people with Hidradenitis Suppurativa (HS) and Sinus Pilonidalis (SP), two chronic skin conditions. It is an independent, nonprofit patiëntenvereniging (patients' association) headquartered in Weesp, Netherlands, with stated reach into Belgium as well. The organization focuses on reducing diagnosis time, improving treatment access, and supporting quality of life through information provision, peer support, and advocacy.

Its core offerings include an annual membership program (adult €27.50/year, youth under 18 €10/year) delivering the HeeldeHuid newsletter (~8 issues/year) and event access; an extensive content library covering HS diagnosis, treatments, wound care, and lifestyle; online and in-person peer-support meetings coordinated with HiCare Dermatology Network across multiple Dutch hospitals; the annual HS Awareness Week campaign in June; a traveling photo exhibition at hospitals; a podcast series (HS en Werken, HS en Voeding, HS en Relatie); and diagnostic tools such as the Signaalkaart and the HS Zorgkaart healthcare map. Distribution channels include the hidradenitis.nl website, Twitter/X, LinkedIn, Facebook, Instagram, and YouTube.

Revenue is generated through three streams: recurring membership fees, tax-deductible donations (enabled by ANBI status), and the PGO instellingssubsidie institutional grant from the Dutch Ministry of Health, Welfare and Sport (VWS). Episodic funding comes from ZonMw project grants and pharmaceutical sponsorships (Novartis, UCB, AbbVie). The organization is affiliated with Huid Nederland, Patiënten Federatie Nederland, and Ieder(In), and operates with a volunteer board structure. There is no proprietary technology product beyond a standard website and digital communications stack; no mobile app, no AI/ML capability, and no disclosed revenue or headcount figures.

Name

Hidradenitis Patiënten Vereniging

Legal name

Hidradenitis Patiënten Vereniging

Website

https://hidradenitis.nl

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Hidradenitis Patiënten Vereniging (HPV) is a Dutch nonprofit patient organization serving people with Hidradenitis Suppurativa and Sinus Pilonidalis through membership services, peer support, information resources, and awareness campaigns across the Netherlands and Belgium.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Individual and Family Services (6241)

SIC

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

akta.pro primary industry

Sexually Transmitted & Genital Dermatology (Venereology) (HLAKACAO)

akta.pro secondary industry

Patient Support Programs & Device/Vaccine Vigilance (PSP/PSUR support) (HLAGALAK)

Keywords

• Patient advocacy services
• Chronic disease support
• Peer support programs
• Patient education resources
• Health awareness campaigns

Headquarters

HQ city

Weesp

HQ country

Netherlands

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Membership fees: Annual membership fees provide core funding. Adult membership costs €27.50 per year, youth membership (under 18) costs €10 per year. Members receive newsletter updates about research and treatments, the HeeldeHuid magazine, and invitations to meetings and peer support events.
2. Donations: One-time or recurring donations starting from €5. The organization has ANBI-status, making donations tax-deductible in the Netherlands.
3. Government subsidy: PGO instellingssubsidie (patient organization institutional subsidy) from the Dutch Ministry of Health, Welfare and Sport (VWS).

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

Hidradenitis Patiënten Vereniging (HPV) is a Dutch national patient organization that provides information, peer support, and advocacy for people living with Hidradenitis Suppurativa (HS) and Sinus Pilonidalis (SP). Its core offerings include an annual membership program with newsletter access, comprehensive online educational resources on diagnosis and treatment, in-person and online peer support meetings, awareness campaigns, and tools such as the HS Zorgkaart and Signaalkaart.

Product overview

Hidradenitis Patiënten Vereniging (HPV) operates as a national patient organization rather than a technology company. The organization offers a unified portfolio of membership services, educational resources, peer support programs, and awareness initiatives. Key offerings include the annual membership program with newsletter (HeeldeHuid), comprehensive online information resources covering diagnosis and treatment, peer support meetings both online and at hospitals, the annual HS Awareness Week campaign, and a traveling photo exhibition. The organization also provides the HS Zorgkaart healthcare map and Signaalkaart diagnostic tool, along with podcast series covering topics like work, nutrition, and relationships for HS patients.

Differentiator

Problem solved

Functional benefit

Products and services

• HPV Membership Program Annual membership offering newsletters, the HeeldeHuid magazine, invitations to meetings, and peer support contact for people with HS and SP.
• Information and Education Resources Comprehensive online resources covering HS diagnosis, treatment options, wound care, lifestyle guidance, and practical advice for daily living with the condition.
• Peer Support and Community Programs Peer support meetings (online and in-person at treatment centers), chat sessions with experienced peers, and patient connection programs.
• HS Awareness Week Annual awareness campaign (June) featuring educational events, photo exhibitions, webinars, and patient meetings to increase recognition and reduce diagnosis time for HS.
• Traveling Photo Exhibition A traveling photo exhibition portraying the taboo around HS, displayed at hospitals with HiCare specialists across the Netherlands to raise awareness.
• HeeldeHuid Newsletter Digital and printed newsletter providing updates on research, treatments, and association activities, published approximately 8 times per year.
• HS Zorgkaart (Healthcare Map) Infographic resource helping patients locate appropriate HS treatment centers and healthcare providers across the Netherlands.
• Signaalkaart (Signal Card) Diagnostic tool to help recognize and signal symptoms of Hidradenitis Suppurativa for earlier diagnosis.
• Podcast Series (HS en Werken, HS en Voeding, HS en Relatie) Audio content series covering topics relevant to HS patients including work, nutrition, and relationships.

Segments5 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered core and minor.

• Huid NederlandcoreOthersHPV is affiliated with Huid Nederland (Skin Netherlands), the umbrella organization for skin-related patient organizations in the Netherlands.
• Patiënten Federatie NederlandcoreOthersThrough Huid Nederland, HPV is connected to the Patiënten Federatie (Patient Federation) of the Netherlands, representing patient interests at national level.
• Ieder(In)minorOthersThrough Huid Nederland, HPV is affiliated with Ieder(In), the Dutch organization representing people with a disability or chronic illness.
• Ministerie van VWScoreOthersHPV receives PGO instellingssubsidie (patient organization institutional subsidy) from the Dutch Ministry of Health, Welfare and Sport.
• NovartisminorGTM or Marketing PartnerPharmaceutical company Novartis is listed as a partner/sponsor. Novartis has supported HPV activities and publications including the 'Ongezien Veel Leed' report.
• UCBminorGTM or Marketing PartnerPharmaceutical company UCB is listed as a partner/sponsor supporting HPV activities.
• AbbVieminorGTM or Marketing PartnerPharmaceutical company AbbVie is listed as a partner/sponsor supporting HPV activities.
• HiCare Dermatology NetworkcoreStrategic or Co-development PartnerHPV collaborates with HiCare, a network of dermatologists specializing in HS treatment. Together they organize patient meetings, photo exhibitions, and projects like HiCare 2.0 to improve HS care.
• Various Dutch hospitalscoreStrategic or Co-development PartnerHPV partners with hospitals across the Netherlands for patient meetings and photo exhibitions, including: Meander MC (Amersfoort), Radboudumc (Nijmegen), UMCG (Groningen), Bravis Ziekenhuis (Bergen op Zoom), Medisch Spectrum Twente (Enschede), Ziekenhuis Groep Twente (Almelo), Zuyderland Medisch Centrum (Sittard-Geleen), IJsselland Ziekenhuis (Capelle aan den IJssel), Maasstad Ziekenhuis (Rotterdam), Deventer Ziekenhuis, HMC/HagaZiekenhuis (Den Haag/Leidschendam), and dermaTeam (Middelburg).

Scale indicators2 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Vereniging voor Mensen met Constitutioneel Eczeem (VMCE): Dutch patient association for people with constitutional eczema, another Huid Nederland member. Operates the same member-driven, government-subsidy-funded advocacy model as HPV for a chronic skin condition.
• Psoriasispatiënten Nederland: Dutch national patient organization for psoriasis, structurally comparable to HPV in operating model (membership fees, donations, PGO subsidy, Huid Nederland affiliation) and serving a chronic skin disease population.
• Huid Nederland: Dutch umbrella organization for skin patient organizations, of which HPV is a member. Directly comparable as a coordinating skin-patient advocacy body with shared government subsidy and federation relationships.
• The HS Foundation: US-based nonprofit dedicated to research, awareness, and support for HS patients. Comparable as an HS-specific patient/research advocacy organization with global digital reach competing for HS patient mindshare.
• Hope for HS: US-based 501(c)(3) patient advocacy organization focused on Hidradenitis Suppurativa. Mirrors HPV's mission of awareness, support, and education for HS patients and shares the same disease-specific patient-organization model.
• Hidradenitis Suppurativa Trust: UK-based HS-specific patient charity offering support, information, and advocacy. Comparable to HPV as a country-level HS-focused patient organization with peer support and awareness-raising programs.

Others

• Nederlandse Vereniging voor Dermatologie en Venereologie (NVDV): Dutch professional association for dermatologists, including HS specialists. Comparable as the clinical counterpart interacting with HPV's HiCare hospital partners and treatment-guideline ecosystem, though it represents providers rather than patients.

Broad incumbents

• Patiënten Federatie Nederland: Dutch national umbrella federation representing collective patient interests, of which HPV is connected through Huid Nederland. Comparable as a higher-tier patient-advocacy organization but operating at national/policy level rather than disease-specific.
• Ieder(In): Dutch network organization for people with chronic illness and disabilities, affiliated with HPV via Huid Nederland. Comparable in advocating for chronically ill populations but across all conditions rather than a single disease.

Regional players

• Deutscher HS Selbsthilfeverein: German HS patient self-help organization. Comparable as a national-level HS patient group with peer support and information resources, but serving Germany rather than the Netherlands.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/hidradenitisnl
• YouTubeyoutube.com/channel/UC2s2txI5V4zTpzlYi5BexFQ
• Facebookfacebook.com/HidradenitisPatientVereniging
• LinkedInlinkedin.com/company/hidradenitis-patienten-vereniging
• Instagraminstagram.com/hidradenitisnl/?igshid=YmMyMTA2M2Y=

Compliance1 record

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 Hidradenitis Patiënten Vereniging