The Irish Haemophilia Society

What The Irish Haemophilia Society does

The Irish Haemophilia Society is a registered Irish charity (Charity No. 9214; Company No. 142834) founded in 1968 by parents of children with haemophilia, headquartered at Cathedral Court, Dublin 8. It serves people in Ireland living with haemophilia A and B, von Willebrand disorder, rare factor deficiencies, and platelet disorders, along with their families, caregivers, women carriers, and adolescents transitioning to adult care. Its core offerings are non-commercial: a comprehensive educational content library (quarterly magazines, booklets, novel-products reviews, webinars, podcasts, videos, infographics, monthly e-zine), direct outreach and psychosocial support (counselling, home/hospital/school visits, a WhatsApp peer community, a mothers' group, and the Hyde Square apartment for members travelling to Dublin), advocacy representation on statutory bodies (National Haemophilia Council, Product Selection & Monitoring Advisory Board, Consultative Council on Hepatitis C), and treatment-centre coordination with Ireland's three EHCCC-certified centres (St. James's NCC, Cork University Hospital, CHI Crumlin) and University Hospital Galway.

The underlying technology stack is modest and conventional for a nonprofit: a WordPress/CMS website (haemophilia.ie, redesigned 2022), standard social-media channels (Facebook, X, YouTube, LinkedIn, WhatsApp Community), and an external patient-portal link (MyIndici). There are no proprietary AI, data, or software products and no disclosed integrations or APIs; the Society's 'platform' is its content library and community, not software. Revenue is sourced from donations, fundraising appeals (including a Planned Giving legacy programme), membership fees, and likely institutional grants; all member-facing services are provided at no charge. The Society holds a recognized statutory advisory role in Irish haemophilia policy and operates as the national umbrella body for the Irish bleeding-disorder community, with international affiliations to the World Federation of Haemophilia and the European Haemophilia Consortium.

Name

The Irish Haemophilia Society

Legal name

Irish Haemophilia Society

Website

https://haemophilia.ie

Company type

Private

Founded year

1968

Operating status

Operating

Headcount range

1–10 employees

Short description

The Irish Haemophilia Society is a Dublin-based registered charity, founded 1968, providing education, psychosocial support, and national-level advocacy for people in Ireland living with haemophilia, von Willebrand disorder, and other inherited bleeding disorders, funded primarily through donations, fundraising, and membership.

Ownership category

akta.pro rank

Product category

Patient Advocacy and Healthcare Support Services

NAICS

Voluntary Health Organizations (813212), Services for the Elderly and Persons with Disabilities (62412), Individual and Family Services (6241)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Youth Mental Health, Counseling & Wellbeing (Education-Linked) Nonprofits (BPAGADAK)

Keywords

• Patient advocacy services
• Bleeding disorder support
• Haemophilia education resources
• Nonprofit health charity
• Membership healthcare society

Headquarters

HQ city

Dublin

HQ country

Ireland

HQ region

Europe

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The organization raises funds through donations, fundraising events, and appeals. They have a Planned Giving Appeal program for legacy donations.
2. Membership: Members can join the Society through registration, providing a membership framework for those affected by bleeding disorders.
3. Government and Institutional Support: As a registered charity (No. 9214) and company (No. 142834), the Society likely receives government grants and institutional support for healthcare advocacy organizations.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels10 records

Core offering

The Irish Haemophilia Society is a registered Irish charity that provides education, advocacy, and support services for people living with haemophilia, von Willebrand disorder, rare factor deficiencies, and platelet disorders. Its core offerings include counselling and outreach services, an extensive educational publications library (quarterly magazines, booklets, e-zines), webinars and multimedia content, advocacy representation on national haemophilia policy bodies, peer-support community groups, an apartment facility (Hyde Square) for members travelling to Dublin for treatment, and educational grants. All services are provided at no cost to members and families across Ireland.

Product overview

The Irish Haemophilia Society is a patient advocacy organization that does not offer a commercial product in the traditional sense. Instead, it provides a comprehensive suite of support services and educational resources for people living with haemophilia, von Willebrand disorder, and other inherited bleeding disorders. The organization's offerings include quarterly and monthly publications (magazines, e-zines), information booklets, webinars, podcasts, videos, and infographics. Support services encompass counselling, advocacy, an apartment facility for traveling patients, educational grants, and a WhatsApp community. The society also maintains a treatment centre directory and facilitates connections between patients and healthcare providers through events and conferences.

Differentiator

Problem solved

Functional benefit

Products and services

• Outreach and Support Services Counselling and psychosocial support services for members and families affected by bleeding disorders, including home, hospital, and school visits by Society staff. Provided free of charge.
• Education and Information Services Educational programs and information dissemination services helping members understand bleeding disorders, treatment options (including gene therapy and novel therapies), and condition management. Delivered via publications, webinars, podcasts, videos, and infographics.
• Advocacy Services Representation and advocacy on behalf of the Irish bleeding-disorder community with national bodies including the National Haemophilia Council, the Haemophilia Product Selection & Monitoring Advisory Board, and the Consultative Council on Hepatitis C.
• Apartment Facility (Hyde Square) Free or subsidised accommodation facility available to members travelling to Dublin for treatment or appointments at Irish haemophilia treatment centres, including the National Coagulation Centre at St. James's Hospital.
• Membership Program Membership program allowing individuals with bleeding disorders and their families in Ireland to join and access Society resources, publications, support services, events, and conferences.

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

Ten partnerships are on record, tiered core, major and minor.

• National Coagulation Centre (NCC) at St. James's HospitalcoreStrategic or Co-development PartnerThe NCC in St. James's Hospital Dublin is one of three European Haemophilia Comprehensive Care Centres (EHCCC) certified in Ireland. The Irish Haemophilia Society works closely with the NCC teams, holding regular team meetings for collaboration and addressing issues.
• Cork Coagulation Centre (Cork University Hospital)coreStrategic or Co-development PartnerCork University Hospital Coagulation Centre is a certified European Haemophilia Comprehensive Care Centre (EHCCC) providing comprehensive care to adults with bleeding disorders in the southern region.
• Children's Health Ireland (CHI) at CrumlincoreStrategic or Co-development PartnerCHI at Crumlin is a certified European Haemophilia Comprehensive Care Centre (EHCCC) providing comprehensive care to children with bleeding disorders.
• University Hospital GalwaycoreStrategic or Co-development PartnerA haemophilia treatment centre in Ireland providing treatment services for people with bleeding disorders in the western region.
• National Haemophilia CouncilcoreStrategic or Co-development PartnerThe Society contributes effectively to the National Haemophilia Council, which sets national treatment guidelines and protocols for haemophilia care in Ireland.
• Haemophilia Product Selection & Monitoring Advisory BoardcoreStrategic or Co-development PartnerThe Society participates in the Product Selection Board which advises on product selection and monitoring for haemophilia treatment in Ireland.
• Consultative Council on Hepatitis CcoreStrategic or Co-development PartnerThe Society contributes to the Consultative Council on Hepatitis C, which supports people with haemophilia who were affected by hepatitis C contamination in blood products.
• World Federation of Haemophilia (WFH)majorStrategic or Co-development PartnerInternational organization for haemophilia care. The Irish Haemophilia Society participates in WFH programs including international development work (twinning) and supports the WFH Passport for treatment centre access worldwide.
• European Haemophilia Consortium (EHC)majorStrategic or Co-development PartnerEuropean patient organization for haemophilia. The Society works with EHC on European initiatives and principles of care, including the European Principles of Inhibitor Management.
• Barretstown CampsminorStrategic or Co-development PartnerBarretstown provides camps for children with bleeding disorders, supported by the Society as part of services for families.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• The Haemophilia Society (UK): The UK national charity for people with bleeding disorders, providing member services, publications, advocacy, and treatment-centre engagement. Highly comparable structure and mission to the Irish Society, with a similar product portfolio (magazines, conferences, support services) and regulatory footprint with NHS bodies.
• Canadian Hemophilia Society: Canadian national patient organisation offering education, research funding, chapter-based community support, and advocacy on blood-product safety. Closely analogous mission, multi-chapter federation model, and reliance on donations and government grants make it a strong peer.
• Haemophilia Foundation Australia: Australian national haemophilia patient body delivering education, peer support, and advocacy across state chapters. Directly comparable as a country-level rare bleeding-disorder charity with similar member services and treatment-centre partnerships.

Others

• EURORDIS - Rare Diseases Europe: European umbrella alliance for rare-disease patient organisations, of which bleeding-disorder societies are members. Adjacent rather than competing — provides policy advocacy and capacity-building that the Irish Society benefits from.
• Irish Platform for Patient Organisations, Science & Industry (IPPOSI): Irish umbrella for patient organisations working on health-research and access policy. A domestic ecosystem peer rather than direct competitor — useful for understanding the Society's positioning within the Irish patient-advocacy landscape.

Broad incumbents

• Hemophilia Federation of America: US-based bleeding-disorder advocacy organisation focused on community outreach, insurance access, and member support. Comparable as a broader-scale national peer offering similar member-support and policy advocacy services.
• National Hemophilia Foundation (USA): The largest US haemophilia patient organisation, providing chapters, research funding, advocacy, and extensive educational content. Larger and broader in scope than the Irish Society, but highly comparable mission and product mix including publications and community programmes.
• World Federation of Hemophilia (WFH): Global umbrella organisation for haemophilia care with which the Irish Society is formally affiliated. Provides international development, treatment-access programmes, and the WFH Passport — comparable as a higher-tier umbrella body operating in the same patient-advocacy category.
• European Haemophilia Consortium (EHC): European-level umbrella patient organisation with which the Society collaborates on principles of care and inhibitor management. Operates one tier above the Irish Society but addresses the same patient population across Europe.

Emerging players

• Alpha-1 Foundation: US-based rare-disease patient organisation for alpha-1 antitrypsin deficiency. Comparable as a national rare-disease charity offering education, advocacy, research funding, and community support to a similarly sized patient population.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/HaemophiliaIRL
• YouTubeyoutube.com/channel/UCz8nhSKxXg8DVQH2c-Rd55A
• Facebookfacebook.com/irishhaemophiliasociety
• LinkedInlinkedin.com/company/irish-haemophilia-society

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 The Irish Haemophilia Society