Immune Deficiencies Foundation Australia

What Immune Deficiencies Foundation Australia does

Immune Deficiencies Foundation Australia (IDFA) is a national not-for-profit organization and registered charity (company limited by guarantee) founded in 2005 and headquartered in Wollongong, NSW. It operates as Australia's peak patient body for people living with primary immunodeficiencies (PIDs) and, since 2017, secondary immunodeficiencies (SIDs) caused by transplantation, disease, or treatment such as chemotherapy. IDFA serves three primary constituencies: patients with confirmed PID/SID, their carers and family members, and the healthcare professionals (immunologists, allergists, GPs, nurses) who treat them, with all services delivered free of charge under a freemium membership model.

The organization's service portfolio is organized around four pillars: education, community connection, advocacy, and resource distribution. Core programs include a publications library of 50+ resources, the Immunodeficiency Insights Webinar Series (Lifestyle, Medical, Practical tracks), IDFA Deep Dives video content (Expert Series, Hot Topics, IDFA Shorts), condition- and life-stage-specific Member Toolkits, the Circle of Support 12-week peer mentoring program, and eight specialized private Facebook support groups. Community is extended through National Conferences, state-based meetups (including SA, WA, Tasmania), Coffee Club gatherings, Member Mixers, Online Community Catchups, and Plasma Parties co-hosted with Lifeblood Australia. Advocacy is anchored by a successful campaign for nationwide SCID newborn screening implemented in May 2024. There is no proprietary technology stack; IDFA operates on standard digital platforms (website, Mailchimp email, event tools, Facebook groups) and distributes physical resource packs directly to hospitals and clinics.

IDFA is funded through sponsorships from four pharmaceutical companies (CSL Behring, Grifols, Takeda, Pharming), individual and organizational donations, and a long-running partnership with International Entertainment for external fundraising. The organization is led by CEO Carolyn Dews (appointed March 2020) and a five-person paid staff team, governed by a board chaired by Louise Grant and supported by a Medical Advisory Panel chaired by Dr Melanie Wong of Children's Hospital at Westmead. IDFA is affiliated internationally with the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and works closely with the Australian Society for Clinical Immunology and Allergy (ASCIA) and Rare Voices Australia.

Name

Immune Deficiencies Foundation Australia

Legal name

Immune Deficiencies Foundation Australia

Website

https://idfa.org.au

Company type

Private

Founded year

2005

Operating status

Operating

Headcount range

1–10 employees

Short description

Immune Deficiencies Foundation Australia is a national nonprofit and registered charity founded in 2005 that provides free education, community support, and advocacy for Australians living with primary or secondary immunodeficiencies, their carers, and treating healthcare professionals.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212)

SIC

Services-Membership Organizations (8600)

akta.pro primary industry

International & Local Implementing NGOs (HLAJAKAD)

Keywords

• Patient advocacy services
• Rare disease education
• Immunodeficiency support
• Peer mentoring programs
• Community healthcare

Headquarters

HQ city

Wollongong

HQ country

Australia

HQ region

Oceania

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. Sponsorships and Partnerships: IDFA receives support from pharmaceutical companies including CSL Behring, Grifols, Takeda, and Pharming who sponsor events, resources, and campaigns.
2. Donations: The organization accepts donations from individuals and organizations to support their community events, peer mentoring programs, and member resources.
3. International Entertainment Fundraising: External fundraiser International Entertainment has supported IDFA since inception through show ticket sales benefiting children with special needs and disadvantaged families.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

IDFA is a national not-for-profit peak body offering education, advocacy, awareness and community support for Australians living with primary or secondary immunodeficiencies. The organization delivers a coordinated program of publications, webinars, peer mentoring, support groups, in-person events and policy advocacy to improve patient outcomes and quality of life.

Product overview

IDFA is a national not-for-profit and leading peak body offering education, advocacy and awareness for Australians living with primary or secondary immunodeficiencies. The organization operates a multi-channel service delivery model centered on its Publications Library (50+ resources), Immunodeficiency Insights Webinar Series (Lifestyle, Medical, Practical tracks), IDFA Deep Dives (Expert Series, Hot Topics, IDFA Shorts), Member Toolkits (organized by age/life stage: Child, Young Adult, Adult, Carer, Healthcare Professional), Circle of Support Peer Mentoring Program (12-week one-on-one support), and Online Support Groups (8 condition/life-stage specific Facebook groups). Community connection is facilitated through National Conferences, State Member Meetups, IDFA Coffee Club, Plasma Parties, and Online Community Catchups. The organization also provides e-Newsletters via Mailchimp and distributes free Resource Packs to healthcare settings. All services are free for members, patients, carers, families, and healthcare professionals.

Differentiator

Problem solved

Functional benefit

Products and services

• IDFA Publications Library A digital library of more than 50 publications and resources covering primary and secondary immunodeficiencies, including practical guides, lifestyle series, medical publications, and condition-specific materials available as free downloads for patients, carers, and healthcare professionals.
• Immunodeficiency Insights Webinar Series Regular educational webinars featuring expert speakers covering topics on diagnosis, treatment options such as SCIg and IVIg, gut health, mental health, and living with immunodeficiency, structured into Lifestyle, Medical, and Practical series for the immunodeficiency community.
• IDFA Deep Dives Digital content series featuring Expert Series 30-minute in-depth sessions, Hot Topics 5-minute commentary on emerging issues, and IDFA Shorts 2-4 minute member stories, providing multimedia education for the immunodeficiency community.
• Circle of Support Peer Mentoring Program A 12-week one-on-one peer mentoring program connecting newly diagnosed or challenged members with trained mentors who have lived experience of immunodeficiency, helping participants develop personal action plans and build self-management skills.
• Online Support Groups Eight condition- and life-stage-specific private Facebook support groups including IDFA Connect (general), YAM Connect (18-25), Carers Connect, SCID Connect, Parents Connect, Family Connect, SID Connect, and Youth Connect (12-17), enabling members to connect and share experiences.
• Community Events Program A portfolio of in-person and virtual events including the annual National Conference, State Member Meetups across Australia, IDFA Coffee Club cafe gatherings with $10 vouchers, Member Mixers, Plasma Parties with Lifeblood, and Online Community Catchups.
• IDFA Resource Packs Free physical resource packs containing warning signs posters, support group brochures, and IDFA overview brochures distributed to healthcare professionals, clinics, and hospitals to help identify and support patients with immunodeficiency.
• Member Toolkits Curated digital on-boarding toolkits tailored by life stage including Child, Young Adult (18-25), Adult, Carer, and Healthcare Professionals versions, hosted on Padlet to help new members navigate IDFA services.

Quantifiable outcome

• Achieved nationwide SCID newborn screening implementation from May 2024
• +2 more outcomes

Named customers4 records

Segments3 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 minor and core.

• The SignalminorGTM or Marketing Partner · 1 January 2026The Signal is a supporter of IDFA, appearing in the sponsorship section of the organization's website.
• PharmingcoreGTM or Marketing Partner · 1 January 2024Pharming is a pharmaceutical company sponsor supporting IDFA's mission and programs for the immunodeficiency community.
• Lifeblood Australia (Australian Red Cross)coreStrategic or Co-development Partner · 1 January 2024IDFA partners with Lifeblood Australia for Plasma Parties during International Plasma Awareness Week. These events bring together plasma donors and recipients to highlight the importance of plasma donations, with events held across Australia including Wollongong, Perth, Newcastle, Brisbane, Melbourne, Sydney, and Canberra.
• CSL BehringcoreGTM or Marketing Partner · 1 January 2020CSL Behring is a major sponsor of IDFA, supporting the development and distribution of resources, education campaigns, community events, and awareness initiatives including Patient Meetings, Annual Conference, World PI Week, and Carers Week.
• GrifolscoreGTM or Marketing Partner · 1 January 2020Grifols is a pharmaceutical sponsor supporting IDFA's work in delivering resources and programs for Australians living with immunodeficiencies.
• TakedacoreGTM or Marketing Partner · 1 January 2020Takeda provides unconditional educational grants supporting IDFA's Lifestyle Series content, including the Fatigue publication. Takeda also sponsors IDFA events and awareness campaigns.
• International EntertainmentcoreStrategic or Co-development Partner · 1 January 2005International Entertainment has supported IDFA since inception as an external fundraiser. The organization hosts shows where businesses sponsor tickets for children with special needs and disadvantaged families, with profits supporting IDFA's work with patients and families living with immunodeficiencies.
• International Patient Organisation for Primary Immunodeficiencies (IPOPI)coreOthersIDFA is affiliated with IPOPI, the international peak body for patient organizations working on primary immunodeficiencies globally.
• Australian Society for Clinical Immunology and Allergy (ASCIA)coreOthersIDFA works closely with ASCIA, Australia's leading professional body for clinical immunology and allergy specialists.
• Rare Voices AustraliacoreOthersRare Voices Australia collaborated with IDFA in advocating for nationwide SCID newborn screening implementation.

Scale indicators6 records

Recent moves8 records

Expansion highlights6 records

Broad incumbents

• Rare Voices Australia: Australia's national peak body for people living with rare diseases. Overlaps with IDFA in advocacy and policy work (they collaborated on nationwide SCID newborn screening) but covers the full rare-disease landscape rather than a single condition area.
• IPOPI (International Patient Organisation for Primary Immunodeficiencies): International umbrella organization of national PID patient groups, of which IDFA is an affiliate member. Comparable in mission and content, but operates at the international level coordinating policy, awareness campaigns, and resources across member organizations.
• Genetic Alliance Australia: Australian peak body supporting individuals and families affected by genetic conditions. Comparable in advocacy and family-support orientation but broader in scope, covering many genetic conditions beyond primary immunodeficiencies.

Direct peers

• Jeffrey Modell Foundation: US- and globally-focused PID patient advocacy and research foundation. Highly comparable in disease focus (primary immunodeficiencies) and advocacy orientation, with a stronger research-funding emphasis; IDFA works alongside the international network JMF helped establish.
• SCID Angels for Life: US-based organization dedicated to Severe Combined Immunodeficiency (SCID), a core condition within IDFA's remit. Comparable in supporting families affected by SCID specifically, including around newborn screening and bone-marrow transplant journeys.
• Immune Deficiency Foundation (IDF, US): The largest US-based patient advocacy organization for primary immunodeficiencies. Directly comparable mission (education, advocacy, community support for PID patients), operating at greater scale and serving as the de facto reference model for national PID patient organizations including IDFA.
• AusPIPS: Australian Primary Immunodeficiency Patient Support organisation. Directly comparable disease-specific patient support focus, although smaller in scale and program scope than IDFA.
• Immune Deficiencies Foundation New Zealand (IDFNZ): The New Zealand national patient organization for primary immunodeficiencies. IDFNZ is the most direct peer — same disease focus, similar membership model, and is in fact the organization that helped establish IDFA in 2005.

Others

• ASCIA (Australian Society for Clinical Immunology and Allergy): Australia's professional body for clinical immunology and allergy specialists. IDFA works closely with ASCIA; they are an ecosystem partner rather than a peer, but the comparable focus on immunodeficiency-related clinical practice makes them relevant for comparison.
• Plasma Protein Therapeutics Association (PPTA) Australia: Industry association representing plasma collectors and fractionators (companies including CSL Behring and Grifols — IDFA's core sponsors). Relevant as an ecosystem participant that shapes the plasma-therapy supply environment underpinning IDFA's awareness campaigns.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/ImmuneDeficiencyFoundationAustralia
• LinkedInlinkedin.com/company/the-immune-deficiencies-foundation-of-australia

Revenue estimate

Valuation estimate

Number of profiles

Profiles18 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Immune Deficiencies Foundation Australia