Hae International (haei)

What Hae International (haei) does

HAE International (HAEi) is a global non-profit network founded in 2004 and headquartered in Fairfax, Virginia, with an operations center in Horsens, Denmark. It serves as the coordinating umbrella for 106 national patient organizations across the Americas, APAC, and EMEA, focused on hereditary angioedema (HAE), a rare genetic condition affecting an estimated 1 in 10,000 to 1 in 50,000 people. HAEi's mission is to provide tools, resources, educational programs, and hands-on assistance that empower awareness, accelerate diagnosis, and champion access to life-saving HAE therapies.

The organization's service portfolio spans digital and in-person channels. Digital products include the HAE TrackR electronic diary app (secure, product- and company-neutral, EU-GDPR compliant), the HAE Companion v2.0 travel app with Emergency Cards, a global HAE healthcare directory, and geofencing push notifications, the HAEi Advocacy Academy (free online learning platform), the HAEi LEAP youth education program, and member-organization tools HAEi Connect and HAEi FocalPoint. In-person channels include regional conferences across the three regions drawing 300-700 attendees, biennial global conferences, the annual HAE Day on May 16, and a regional patient advocate program with personnel distributed across Nordics, CEE/Middle East, Sub Sahara Africa, South Eastern Europe, Mediterranean/North Africa/Benelux/British Isles, Central and South Asia/DACH/Israel, East Asia, Southeast Asia/Oceania, South America/Mexico, and Central America/Caribbean. HAEi also supports clinical infrastructure via affiliated ACARE (Angioedema Centre of Reference and Excellence) centers and publishes the Global Perspectives magazine and peer-reviewed scientific publications.

The business model is non-profit and does not involve selling to patients or charging member organizations. HAEi is funded primarily through a tiered pharmaceutical industry sponsorship program (Diamond, Gold, Silver supporter levels), with 2026 supporters including BioCryst (Diamond), CSL Behring, Pharming, and Takeda (Gold), plus Adarx, Argo Biopharma, Intellia, Ionis, KalVista, Otsuka, and Pharvaris (Silver). Distribution is network-based: 106 national member organizations serve as in-country reach vehicles, while regional patient advocates and hosted country websites handle awareness, diagnosis acceleration, and treatment-access advocacy. Leadership is led by CEO Henrik Balle Boysen, Executive Chairman Anthony J. Castaldo (a founding board member), and COO Jørn Schultz-Boysen.

Name

Hae International (haei)

Legal name

HAE International (HAEi)

Website

https://haei.org

Company type

Private

Founded year

2004

Operating status

Operating

Short description

HAE International (HAEi) is a global non-profit network founded in 2004 that coordinates 106 national hereditary angioedema patient organizations across the Americas, APAC, and EMEA, providing digital tools, educational programs, advocacy training, and regional conferences.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Business Associations (813910)

SIC

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

akta.pro primary industry

Health Systems Strengthening & Universal Health Coverage (UHC) (BPADAIAE)

Keywords

• Patient advocacy network
• Rare disease support
• Hereditary angioedema
• Patient education resources
• Non-profit healthcare

Headquarters

HQ city

Fairfax

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Pharmaceutical Industry Support: HAEi receives financial support from pharmaceutical companies in the HAE treatment space. The 2026 supporters include BioCryst (Diamond), CSL Behring, Pharming, Takeda (Gold), Adarx, Argo Biopharma, Intellia, Ionis, KalVista, Otsuka, Pharvaris (Silver).

Go-to-market motion1 record

Distribution channels6 records

Marketing channels9 records

Core offering

HAEi operates a global non-profit network supporting hereditary angioedema (HAE) patient organizations across 106 countries. It provides digital tools (HAE TrackR and HAE Companion mobile apps), educational platforms (HAEi Advocacy Academy, HAEi LEAP for youth), organizational resources (HAEi Connect, HAEi FocalPoint, Global Access Program), and awareness resources (Emergency Cards, Global Perspectives Magazine). The organization also hosts regional and global conferences and runs the annual hae day :-) awareness day on May 16.

Product overview

HAE International (HAEi) operates as a global non-profit network organization serving Member Organizations in 106 countries. The organization provides a portfolio of digital tools and programs including the HAE TrackR app (electronic diary for attack tracking) and HAE Companion app (travel companion with emergency cards). HAEi offers educational platforms such as HAEi Advocacy Academy (online advocacy training) and HAEi LEAP (youngsters' program). The organization supports member organizations through HAEi Connect, HAEi FocalPoint, and HAEi Global Access Program. Additional resources include ACARE (centers of reference and excellence), Emergency Cards, Global Perspectives Magazine, HAE Insights educational videos, Virtual Centers, and hosted regional websites. HAEi also organizes regional conferences in Americas, APAC, and EMEA, as well as global conferences and the annual HAE day :-) awareness event on May 16th.

Differentiator

Problem solved

Functional benefit

Products and services

• HAE TrackR App Easy-to-use electronic diary designed to record HAE attacks, treatments, and impact on daily life. Secure, product and company neutral, EU-GDPR compliant, accessible from any device worldwide.
• HAE Companion App Pocket-size travel partner featuring HAE Emergency Cards, a global HAE healthcare directory, and geofencing capabilities with push notifications.
• HAEi Advocacy Academy Free, online learning platform providing advocacy training, courses, and tools to support people living with HAE and help everyone become HAE advocates.
• HAEi LEAP Educational program that allows young people with HAE to learn new skills, develop as individuals, and become advocates for HAE awareness.
• HAEi Connect Platform for HAEi Member Organizations providing tools, resources, and support for advocacy and awareness activities.
• HAEi FocalPoint Tool provided to HAEi Member Organizations to support their organizational activities and advocacy efforts.
• HAEi Global Access Program Program aimed at improving access to life-saving HAE therapies globally for member organizations and patients.
• ACARE (Angioedema Centre of Reference and Excellence) Global network of specialized centers providing expert care and resources for HAE patients and healthcare professionals.
• Emergency Cards Pocket-size travel cards containing clear information about HAE and treatment required during an attack, available in multiple languages.
• Global Perspectives Magazine Publication providing news, inspirational articles featuring HAE patients, detailed information from Member Organizations, interviews with experts, and the latest industry news.
• HAE Virtual Centers Virtual resources and centers for healthcare professionals providing educational content and guidelines for HAE care.
• HAE Insights Educational video series designed to help doctors identify, diagnose, and treat Hereditary Angioedema, particularly in limited resource settings.
• HAE Youngsters' Community Dedicated online community for young people to learn, stay connected, share experiences, and have fun while living with HAE.
• HAEi Hosted Websites Website hosting services provided to regional and national member organizations including Asia Pacific, Middle East and North Africa, and Sub Sahara Africa.
• HAE day :-) Annual awareness day celebrated on May 16th uniting the HAE community with activities to raise awareness among general public, healthcare professionals, and decision-makers.
• HAEi Regional Conferences Regional conferences held in Americas, APAC, and EMEA regions bringing together patients, caregivers, physicians, scientists, and industry representatives.
• HAE Global Conferences International conferences bringing together the global HAE community for advocacy training, education, and networking.
• HAEi Virtual Regional Workshops Virtual workshop events providing educational content and community engagement for HAE stakeholders.

Quantifiable outcome

• 2025 EMEA Regional Conference: 700 attendees from European, Middle Eastern, and African countries
• +2 more outcomes

Named customers1 record

Segments4 records

Ideal customer profiles4 records

Technology focussed Yes

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature6 records

Partnerships

Three partnerships are on record, tiered minor and core.

• Organization for Rare Diseases India (ORDI)minorStrategic or Co-development PartnerORDI President Prasanna Shirol participated in HAE India events, collaborating on rare disease advocacy efforts in India.
• GA2LEN (Global Allergy and Asthma European Network)coreStrategic or Co-development PartnerHAEi cooperates and affiliates with GA2LEN, an European network focused on allergy and asthma, for medical collaboration and standards.
• ACARE (Angioedema Centre of Reference and Excellence)coreStrategic or Co-development PartnerACARE is a network of specialized HAE treatment centers that HAEi collaborates with to improve care standards and patient access to expertise.

Scale indicators4 records

Recent moves6 records

Expansion highlights6 records

Emerging players

• National Hemophilia Foundation: National Hemophilia Foundation is a US patient advocacy organization for the bleeding disorders community, serving chronic rare-disease populations with similar treatment access challenges, pharmaceutical sponsor dependencies, and chapter-based advocacy models that mirror HAEi's member organization structure.
• Immune Deficiency Foundation: Immune Deficiency Foundation is a US-based patient advocacy organization serving people with primary immunodeficiency diseases. It is comparable to HAEi as a chronic rare-disease patient advocacy organization with pharma sponsor relationships, regional chapters, and education/advocacy programs for a similarly sized patient population.

Broad incumbents

• Genetic Alliance: Genetic Alliance is a US-based non-profit focused on genetic and rare disease advocacy, providing tools and infrastructure for patient organizations. It is comparable to HAEi in serving rare disease patient communities with digital tools, member organization support, and policy advocacy.
• EveryLife Foundation for Rare Diseases: EveryLife Foundation is a US rare disease advocacy organization focused on accelerating biotech innovation and equitable access to therapies. It is comparable to HAEi as a rare disease advocacy non-profit with pharma partnerships and policy engagement around treatment access, but with a US-focused policy emphasis.
• Global Genes: Global Genes is a US-based rare disease advocacy organization focused on patient empowerment, education, and connections across the rare disease community. It is comparable to HAEi as a global rare-disease advocacy non-profit competing for similar sponsorships and serving overlapping patient constituencies.
• National Organization for Rare Disorders (NORD): NORD is a US-based umbrella advocacy organization serving all rare disease patients (~7,000 conditions). It is comparable to HAEi as a sibling rare-disease patient advocacy non-profit competing for similar pharma sponsorship dollars and policy influence, though operating at broader scale across conditions rather than HAE-specific.

Direct peers

• EURORDIS - Rare Diseases Europe: EURORDIS is a European non-profit alliance of over 1,000 rare disease patient organizations across 74 countries. It is directly comparable to HAEi as a multi-country rare disease membership network with regional advocacy, policy influence, and pharma partnerships across European and adjacent markets.
• US Hereditary Angioedema Association (HAEA): HAEA is HAEi's largest member organization, serving 11,000+ US HAE patients. It is directly comparable as a disease-specific patient advocacy organization with the same leadership overlap (Anthony J. Castaldo is CEO of both HAEi and HAEA), and shares mission, sponsors, and programs.
• Rare Diseases International: Rare Diseases International is the global alliance of rare disease patient organizations operating across regions including Asia, Latin America, and Europe. It is directly comparable to HAEi as a global non-profit network for rare disease patient organizations with similar multi-regional advocacy, conference, and policy engagement models.

Regional players

• Orphanet: Orphanet is a European-hosted reference portal for rare diseases providing data, classifications, and resources. It is comparable to HAEi as an enabling infrastructure provider for the rare disease community, particularly relevant given HAEi's hosting of country websites and member resources serving a similar informational function.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/HAEinternationa
• LinkedInlinkedin.com/company/hae-international-haei
• Instagraminstagram.com/hae_international

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Subsidiaries9 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Hae International (haei)