Immune Deficiency Foundation

What Immune Deficiency Foundation does

Immune Deficiency Foundation (IDF) is a 501(c)(3) nonprofit patient organization founded in 1980 and headquartered in Hanover, Maryland (EIN 52-1214782), dedicated to improving the diagnosis, treatment, and quality of life for individuals and families affected by primary immunodeficiency (PI) — a class of more than 550 rare inborn errors of immunity affecting an estimated 1 in every 1,600–1,700 people in the U.S. The organization operates a comprehensive, multi-channel service portfolio that spans four functional pillars: education (the Patient & Family Handbook, IDF Podcast with sub-series like Undiagnosed and Bold Conversations, the Immune System Self-Assessment tool, and the 'Compromised: Life Without Immunity' documentary), direct support (AskIDF expert consultations, IDF Friends online community at idffriends.org, and Get Connected peer support groups), clinical navigation (Clinician Finder, Consulting Immunologist Program, clinician education), and research and advocacy (Research Grant Program, community surveys, SCID newborn screening advocacy, and the Immunocompromised Collaborative). According to the 2025 Community Impact Report, IDF supported 34,034 individuals living with PI, facilitated 2,226 answered questions through AskIDF, and recorded 1.8 million website sessions.

Underlying technology consists of standard digital advocacy infrastructure — a Drupal-based content website (primaryimmune.org), Salesforce-backed event listings, community forums, email and SMS subscription systems, and YouTube-hosted media — rather than proprietary technology products. IDF does not develop commercial software or scientific platforms; the technology layer exists to deliver educational content, facilitate peer connection, and enable donations and event registration.

The business model is a donation-funded, fee-free nonprofit model. All resources, support services, and educational materials are provided at no cost to patients, caregivers, and clinicians. Revenue is sourced from individual donations, legacy giving, workplace giving programs, tribute gifts, sustainer/membership giving, peer-to-peer fundraising (including Facebook fundraisers and DIY fundraisers), and Walk and Community Days events held in six U.S. cities plus virtual coast-to-coast participation. Content creator partnerships (notably CDawgVA and Ironmouse) and the Plasma Hero campaign diversify awareness and fundraising reach. GTM is mission-driven, not commercial: IDF markets itself through content marketing, organic social (Facebook, X, LinkedIn, Instagram, YouTube), email/SMS, podcasts, documentaries, in-person and virtual events, and community programming targeted at four personas — individuals living with PI (primary), caregivers/family (primary), healthcare professionals (secondary), and general supporters (secondary).

Name

Immune Deficiency Foundation

Legal name

Immune Deficiency Foundation

Website

https://primaryimmune.org

Company type

Private

Founded year

1980

Operating status

Operating

Headcount range

11–50 employees

Short description

Immune Deficiency Foundation is a 501(c)(3) nonprofit patient organization founded in 1980, dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by primary immunodeficiency (PI). It delivers free education, peer support, clinical navigation, research grants, and policy advocacy at national scale.

Ownership category

akta.pro rank

Product category

Nonprofit Patient Advocacy Services

NAICS

Voluntary Health Organizations (813212)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Primary Immunodeficiency (PID) & Immune Deficiency Clinics (HLAKAAAI), Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

Keywords

• Patient advocacy services
• Rare disease education
• Immune deficiency support
• Nonprofit healthcare research
• Community peer support

Headquarters

HQ city

Towson

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The IDF operates as a 501(c)(3) non-profit organization (EIN: 52-1214782) that relies on donations from individuals, families, and supporters to fund its resources, services, and outreach programs.

Distribution channels3 records

Marketing channels7 records

Core offering

The Immune Deficiency Foundation is a national nonprofit patient organization that improves the diagnosis, treatment, and quality of life for people with primary immunodeficiency through free educational resources (handbooks, podcasts), peer support programs (Ask IDF helpline, peer groups, IDF Friends), patient-to-clinician connection tools (clinician finder, self-assessment), awareness/fundraising campaigns (Walk for PI, Plasma Hero), and research grant funding.

Product overview

The Immune Deficiency Foundation offers a comprehensive suite of educational, support, and research services for individuals affected by primary immunodeficiency (PI). The core offerings include the IDF Patient & Family Handbook (print resource), the IDF Podcast series with sub-series Undiagnosed and Bold Conversations, and the Ask IDF expert consultation service. Community support is provided through the IDF Friends online community and Get Connected peer groups. The Foundation provides diagnostic tools including an immune system self-assessment and a Clinician Finder database. Research initiatives include a Research Grant Program and community surveys. Awareness efforts feature the Plasma Hero campaign, the annual Walk and Community Days events, and the documentary 'Compromised: Life Without Immunity' available on YouTube. All services are funded primarily through donor contributions.

Differentiator

Problem solved

Functional benefit

Brands

• Think Zebra: IDF's motto and awareness campaign. People with primary immunodeficiencies are like the zebras of the medical world—rare and worthy of attention and care.

Products and services

• Patient & Family Handbook A comprehensive educational resource that explains primary immunodeficiency diseases, treatment options such as immunoglobulin therapy, and daily living guidance for patients and their families.
• IDF Podcast An audio podcast that delivers educational content, patient stories, and expert interviews to the primary immunodeficiency community.
• Ask IDF Support Service A direct support service that allows patients, families, and caregivers to ask questions and receive guidance on primary immunodeficiency-related issues.
• Peer Support Groups Peer-led support groups that connect patients and families affected by primary immunodeficiency for shared experience, encouragement, and community connection.
• IDF Friends / Get Connected Community A community-building program that connects patients and families affected by primary immunodeficiency through informal friendship and connection opportunities.
• IDF Research Grants Program A research-grant program that funds scientific investigation into primary immunodeficiency diseases to advance diagnosis, treatment, and patient outcomes.
• Walk for PI and Community Days Grassroots fundraising and awareness walk events held in local communities across the United States to support IDF's mission and raise primary immunodeficiency awareness.
• Plasma Hero Awareness Campaign A public awareness campaign that highlights the importance of plasma donors in supporting treatment for primary immunodeficiency patients and encourages plasma donation.
• Clinician Finder Tool An online directory that helps patients locate clinicians and immunologists experienced in diagnosing and treating primary immunodeficiency diseases.
• Primary Immunodeficiency Self-Assessment Tool An online self-assessment tool that helps individuals evaluate whether they may be experiencing symptoms of primary immunodeficiency and guides next steps such as clinical evaluation.

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

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

• Mediaplanet (Rare Diseases Campaign)minorGTM or Marketing Partner · 13 March 2026Nationwide Rare Diseases campaign launched by Mediaplanet to raise awareness, promote early diagnosis, and improve treatment options for rare diseases. Involves collaboration between researchers, patient advocates, healthcare institutions, and pharmaceutical companies.
• CDawgVA (Connor Colquhoun) and VTuber IronmousemajorGTM or Marketing PartnerContent creator partnership where Connor Colquhoun (CDawgVA) and Ironmouse, a VTuber living with common variable immune deficiency (CVID), came together to support IDF. What began as a friendship has grown into one of the most impactful partnerships in content creator fundraising, helping raise awareness and funds for the immunocompromised community.
• Immunocompromised CollaborativecoreStrategic or Co-development PartnerCoalition of organizations joining forces to protect the most vulnerable against infectious disease. IDF participates as a member organization working collaboratively on policy advocacy and awareness initiatives.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Jeffrey Modell Foundation: Also dedicated specifically to primary immunodeficiency; operates a global network of diagnostic and research centers. Closest direct peer given the shared PI-only mission, fundraising model, and research-grant funding approach.
• Cystic Fibrosis Foundation: Patient advocacy nonprofit for a single rare genetic disease with analogous programs: research grants, clinician finder, community walks, newborn screening advocacy, and significant pharma partnerships. Strong operating-model comparable despite a much larger budget.
• Muscular Dystrophy Association: Long-standing rare disease nonprofit running patient services, research grants, clinical care networks, and signature fundraising events (telethons, walks). Comparable mission, multi-disease research portfolio, and donor-driven model.
• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for all rare diseases; IDF is a NORD member. Overlaps heavily in policy advocacy, research grants, and patient services but from a horizontal (all rare diseases) rather than vertical (PI-only) position.

Broad incumbents

• Leukemia & Lymphoma Society: Disease-specific nonprofit at much larger scale, with peer support, research grants, clinician finder, and signature fundraising events (Light The Night). Comparable playbook though it operates across blood cancers rather than a single rare category.

Emerging players

• American Autoimmune Related Diseases Association: Patient advocacy for autoimmune diseases, several of which overlap clinically with PI (autoimmunity is a known feature of many PI subtypes). Comparable smaller-scale nonprofit model with focus on disease-specific education and advocacy.
• Alpha-1 Foundation: Patient advocacy nonprofit for Alpha-1 antitrypsin deficiency, another rare genetic disorder often managed by immunologists. Highly comparable single-disease nonprofit operating model at a smaller scale than IDF.

Regional players

• International Patient Organisation for Primary Immunodeficiencies (IPOPI): International umbrella for PI patient organizations, including IDF's European counterparts. Comparable mission and product structure (educational resources, policy advocacy, awareness days) but operates outside the U.S. market IDF serves.
• Immune Deficiencies Foundation of Australia (IDFA): Australia's PI patient organization with closely mirrored programs: Ask the IDFA, peer support, advocacy, and education. Functionally a regional twin of the U.S. IDF, providing a geographic peer benchmark.

Others

• Plasma Protein Therapeutics Association (PPTA): Industry association representing plasma collection and fractionation companies that manufacture immunoglobulin replacement therapy used by many PI patients. Adjacent ecosystem participant rather than a competitor; relevant given IDF's Plasma Hero campaign.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/IDFCommunity
• YouTubeyoutube.com/channel/UC-e7Jua_piexR70CVoaofYw
• Facebookfacebook.com/ImmuneDeficiencyFoundation
• LinkedInlinkedin.com/company/immune-deficiency-foundation
• Instagraminstagram.com/immunedeficiency

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Immune Deficiency Foundation