Patiëntenvereniging Aangeboren Hartafwijkingen

What Patiëntenvereniging Aangeboren Hartafwijkingen does

Patiëntenvereniging Aangeboren Hartafwijkingen (PAH) is a Dutch patient association (vereniging) serving people with congenital heart defects and their families, with a postal address in Haarlem, Netherlands. Its portfolio centers on the LIFE. program — a community platform, magazine, podcast, and Buddy Matching service that connects (young) adults with congenital heart defects to peers for support across life domains (sports, pregnancy, work, mental health). Additional offerings include the quarterly Sinus members magazine, the Hartpaspoort patient document for carrying medical information, professional resources such as a GP brochure (co-developed with VSOP and NHG) and palliative care guidelines, a monthly newsletter, and a calendar of LIFE events including an annual gathering, BBQ, and Nazomerweekend. The organization also facilitates patient participation in research, including the Hartactief project with Erasmus MC Sophia and the OUTREACH consortium on late complications.

PAH operates as a non-profit, membership-based association without disclosed financial scale, paid headcount, or institutional funding. Revenue mechanics rest on annual membership contributions (minimum €50/year) that include the Sinus magazine, tax-deductible periodic donations via a 5-year commitment scheme, and likely supplementary Dutch patient-organization subsidies. Distribution is exclusively within the Netherlands, primarily through the association's website, the membership program, and healthcare professional referrals. Partnerships with VSOP, Stichting Hartekind, NHG, Erasmus MC Sophia Children's Hospital, Hartcentra, and the OUTREACH research consortium anchor the organization within the Dutch congenital heart defect clinical and policy ecosystem. No AI/ML technology stack, mobile application, or commercial product is offered.

Name

Patiëntenvereniging Aangeboren Hartafwijkingen

Legal name

Patiëntenvereniging Aangeborenhartafwijkingen

Website

https://aangeborenhartafwijking.nl

Company type

Private

Operating status

Operating

Headcount range

1–10 employees

Short description

Patiëntenvereniging Aangeboren Hartafwijkingen (PAH) is a Dutch non-profit patient association serving people with congenital heart defects and their families through the LIFE. community platform, magazines, podcast, buddy matching, events, and professional resources in the Netherlands.

Ownership category

akta.pro rank

Headquarters

HQ city

Haarlem

HQ country

Netherlands

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Membership Dues: Members pay annual dues to support the association. Minimum periodic gift of €50 per year includes automatic membership with 4x yearly Sinus magazine.
2. Periodic Donations: Tax-deductible periodic donations (minimum 5-year commitment) allowing donors to contribute more effectively through tax benefits while maintaining the same net cost.

Pricing tiers

Go-to-market motion1 record

Distribution channels3 records

Marketing channels8 records

Core offering

Patiëntenvereniging Aangeboren Hartafwijkingen (PAH) is a Dutch patient association that provides peer support, information, advocacy, and community services for people with congenital heart defects (CHD) and their families. Its deliverables include the LIFE Community, Buddy Matching, LIFE Podcast, LIFE Magazine (Sinus Magazine), the Hartpaspoort patient tool, palliative-care guidelines, and a periodic giving program, all targeted at CHD patients, parents, partners, and caregivers.

Product overview

Patiëntenvereniging Aangeboren Hartafwijkingen (PAH) is a Dutch patient association offering a unified portfolio of peer support and information services for people with congenital heart defects and their families. The core offering centers on the LIFE. program, which combines a community platform, podcast, magazine, and buddy matching service to connect (young) adults. Additional services include the quarterly Sinus members magazine, the Hartpaspoort patient document, professional resources for healthcare providers (GP brochure, palliative care guidelines), a newsletter, events program, periodic giving program, and research participation initiatives like the OUTREACH consortium. The organization does not offer a technology platform or SaaS product.

Differentiator

Problem solved

Functional benefit

Products and services

• LIFE Community
• LIFE Podcast
• Buddy Matching

Quantifiable outcome

• LIFE Community connects (young) adults through magazines, podcasts, buddy matching and events
• +1 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Seven partnerships are on record, tiered core and minor.

• VSOP (Vereniging Samenwerkende Ouder- en Patiëntorganisaties)coreStrategic or Co-development PartnerVSOP is the Dutch Patient Coalition for Rare and Genetic Conditions. PAH collaborates with VSOP on various initiatives including the GP brochure developed together with NHG (Nederlands Huisartsen Genootschap) for primary care physicians.
• Stichting HartekindcoreStrategic or Co-development PartnerFoundation Hartekind collaborates with PAH on research agenda development and organizes the annual Hartekinddag (Heart Child Day). They jointly conduct background consultations to determine research priorities.
• NHG (Nederlands Huisartsen Genootschap)minorStrategic or Co-development PartnerDutch College of General Practitioners collaborated with VSOP and PAH to develop a specialized GP brochure about congenital heart defects for primary care physicians.
• Erasmus MC – Sophia KinderziekenhuiscoreStrategic or Co-development PartnerErasmus MC Sophia Children's Hospital collaborates with PAH on the Hartactief project, developing tools to support movement and sports for children with congenital heart defects. The project includes an parent/patient council for input.
• Hartcentra (Heart Centers)minorStrategic or Co-development PartnerCollaboration with congenital heart defect centers in the Netherlands, including information provision and patient support services at these specialized centers.
• OUTREACH ConsortiumminorStrategic or Co-development PartnerResearch consortium focused on late complications in congenital heart disease. PAH participates as patient representative, contributing to user meetings with researchers.
• Hart in ShapeminorStrategic or Co-development PartnerJoint webinar collaboration on women's heart health and hormones, featuring expert cardiologist Daisy Marie Bouma-van Westing.

Scale indicators4 records

Recent moves1 record

Expansion highlights5 records

Direct peers

• Stichting Hartekind: Stichting Hartekind is a Dutch foundation focused on children with congenital heart defects, funding research and organizing Hartekinddag. It is a current PAH partner but functions as a peer organization serving the same Dutch CHD community through adjacent mission (research funding vs. patient advocacy).
• HeartKids: HeartKids is the Australian patient advocacy organization for children and adults with congenital heart disease, offering peer support, information, and advocacy. Highly comparable as a national CHD patient organization with a similar service portfolio (community, information, advocacy, research participation).
• Children's Heart Foundation: The Children's Heart Foundation is a US nonprofit dedicated to congenital heart defect research funding, education, and awareness. Comparable mission (CHD-focused nonprofit), though with a stronger research-grant emphasis than PAH's peer-support orientation.
• Mended Hearts: Mended Hearts is a US-based peer support organization for heart patients and families. Comparable as a heart-disease patient advocacy nonprofit with hospital-visiting and peer-matching programs, though its scope spans acquired heart disease more broadly.
• Harteraad: Harteraad is the Dutch patient organization for people with cardiovascular disease (broader scope than PAH). It is the most direct domestic peer because both serve Dutch heart patients with peer support, information, and advocacy, though Harteraad covers acquired heart disease in addition to congenital conditions.
• Little Hearts Matter: Little Hearts Matter is a UK charity supporting children with single ventricle heart conditions and their families, providing information, peer support, and advocacy. Comparable as a CHD patient organization focused on a defined subset of conditions with strong peer-support programming.

Broad incumbents

• Patiëntenfederatie Nederland: Patiëntenfederatie Nederland is the umbrella Dutch patient federation representing ~200 patient organizations nationally. Comparable as a Dutch patient advocacy body, though it operates at the system/coalition level rather than providing direct condition-specific peer support like PAH.
• British Heart Foundation: The British Heart Foundation is the UK's largest heart charity, funding research and providing patient information. Comparable thematic overlap (heart health), but operates at much greater scale and scope across all cardiovascular disease, not congenital-specific.
• American Heart Association: The American Heart Association is the largest US heart-health nonprofit, funding research and patient education. Thematically related as a heart-focused patient/research organization, though far broader in scope and not congenital-heart-defect specific.

Others

• VSOP: VSOP is the Dutch coalition of patient organizations for rare and genetic conditions, and a current PAH partner. Comparable as an enabling/coalition player in the same Dutch patient advocacy ecosystem, providing shared infrastructure (e.g., GP brochure collaboration) rather than competing.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/hartafwijking
• Facebookfacebook.com/hartafwijking
• LinkedInlinkedin.com/company/pah

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 Patiëntenvereniging Aangeboren Hartafwijkingen