What Alpha-1 Foundation does

The Alpha-1 Foundation is a 501(c)(3) nonprofit patient advocacy organization founded in 1991 and headquartered at 3300 Ponce de Leon Blvd., Coral Gables, Florida. Its mission is to find a cure for Alpha-1 Antitrypsin Deficiency, a genetic condition affecting an estimated 100,000 people in the United States (with 19 million carriers), over 90% of whom remain undiagnosed. The foundation serves three primary constituencies: Alpha-1 patients and carriers, healthcare providers, and researchers. Core programs include the Alpha-1 Research Registry (a confidential patient database supporting clinical trial enrollment), the Alpha-1 Coded Testing (ACT) Study (free home genetic testing in partnership with the University of Florida), genetic counseling, peer guides, a nationwide support group network, a Patient Information Line, the Alpha-1-to-One Magazine, and a video library of educational content. Educational programming includes an annual National Conference (held in San Diego in June 2026) and six regional Education Days across the U.S. The foundation also funds research grants (130 researchers supported to date), operates a Therapeutic Development Network and the Alpha-1 Biomarkers Consortium, and maintains a DNA and Tissue Bank and Biomaterials Exchange.

Name

Alpha-1 Foundation

Legal name

Alpha-1 Foundation

Website

https://alpha1.org

Company type

Private

Founded year

1991

Operating status

Operating

Headcount range

11–50 employees

Short description

The Alpha-1 Foundation is a 501(c)(3) nonprofit that funds research, provides free genetic testing, genetic counseling, and patient support services, and operates a research registry and AlphaDetect subsidiary to accelerate detection of Alpha-1 Antitrypsin Deficiency for patients, carriers, providers, and researchers.

Ownership category

akta.pro rank

Product category

Patient Advocacy & Rare Disease Research Nonprofit

NAICS

Voluntary Health Organizations (813212), Individual and Family Services (6241)

SIC

Services-Medical Laboratories (8071), Services-Health Services (8000), Services-Social Services (8300)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Patient advocacy services
• Genetic testing programs
• Rare disease research funding
• Patient support services
• Disease awareness education

Headquarters

HQ city

Coral Gables

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, Others

Distribution channels4 records

Marketing channels8 records

Core offering

The Alpha-1 Foundation is a nonprofit patient advocacy organization that provides free programs and services to individuals affected by Alpha-1 Antitrypsin Deficiency, including confidential genetic testing (ACT Study), free genetic counseling, a Patient Information Line, a Peer Guide Program, a nationwide Support Group Network, and educational events. It funds and operates research infrastructure such as the Alpha-1 Research Registry, DNA and Tissue Bank, and Biomaterials Exchange, and has invested over $100 million in research across 130 funded researchers. Its wholly-owned nonprofit subsidiary, AlphaDetect (founded 2025, Durham, NC), accelerates detection through free genetic testing and provider education with support from pharmaceutical industry sponsors.

Product overview

The Alpha-1 Foundation is a nonprofit organization offering a comprehensive suite of programs and services for individuals affected by Alpha-1 Antitrypsin Deficiency. The core offerings include the Alpha-1 Research Registry (a confidential patient database enabling clinical trial participation), the Alpha-1 Coded Testing (ACT) Study (free genetic testing), and AlphaDetect (a 2025-founded subsidiary focused on detection acceleration). Support services encompass the Peer Guide Program, Genetic Counseling Services, Patient Information Line, and a nationwide Support Group Network. Educational resources include the annual A1F National Conference, regional A1F Education Days, the A1F Video Library, and the Alpha-1-to-One Magazine. Financial assistance programs include Educational Scholarships and an Oxygen Travel Fund. The organization also maintains an Alpha-1 Specialist Network for patient referrals. This is not a commercial product company but a patient advocacy and support organization.

Differentiator

Problem solved

Functional benefit

Products and services

• Alpha-1 Research Registry A confidential database of people with Alpha-1 Antitrypsin Deficiency and carriers that enables participation in clinical trials, recruitment by researchers, and distribution of research updates. Offered free of charge to U.S. residents affected by Alpha-1.
• Alpha-1 Coded Testing (ACT) Study Free, confidential genetic testing program providing a home fingerstick test kit to individuals, with results delivered in 4-6 weeks. Conducted in partnership with the University of Florida for individuals who may be affected by Alpha-1.
• AlphaDetect A nonprofit detection organization and wholly-owned subsidiary of the Alpha-1 Foundation, founded in 2025 and based in Durham, North Carolina, dedicated to accelerating detection of Alpha-1 Antitrypsin Deficiency through free genetic testing, provider education, and detection strategies.
• Peer Guide Program Connects newly diagnosed Alphas or individuals affected by Alpha-1 with experienced peer guides who provide emotional support and resources based on similar life circumstances.
• Genetic Counseling Services Free, confidential genetic counseling services provided by phone through a partnership with the University of Florida, offering information about Alpha-1 testing, disease management, and family planning.
• Patient Information Line A free toll-free telephone helpline (1-800-245-6809) operated by the Director of Community Programs, providing patient support on Alpha-1 testing, emotional impact, finding specialists, peer guides, family planning, and care for children with Alpha-1.
• Alpha-1 Foundation Support Group Network A nationwide program providing virtual and in-person support groups, education, and information to people affected by Alpha-1 across the United States.
• A1F National Conference The largest annual gathering of the Alpha-1 community, a three-day event offering educational sessions, networking, advocacy opportunities, and industry interaction for patients, families, providers, and researchers.
• A1F Education Days Regional one-day educational programs held across the U.S. in collaboration with Clinical Resource Centers or in underserved areas, providing medical information and community connection to people affected by Alpha-1.
• A1F Video Library Archive of educational videos from past conferences and education days, organized by event year and topic including lung, liver, pediatric, genetics, and research content.
• Alpha-1-to-One Magazine Full-color magazine providing practical advice, personal experiences, and pertinent news for people affected by Alpha-1 Antitrypsin Deficiency, distributed to subscribers.
• Alpha-1 Educational Scholarships Scholarship program supporting Alphas and their immediate family members pursuing post-high school education, including multiple named scholarships ranging from $500 to $2,500.
• Oxygen Travel Fund Need-based program providing supplemental oxygen and related equipment for financially-eligible Alphas traveling to doctor appointments and educational events.
• Alpha-1 Specialist Network Searchable database of doctors specializing in Alpha-1, filterable by location and area of expertise (lung adult, lung pediatric, liver adult, liver pediatric), to help patients find appropriate care.
• Building Friends for a Cure (BFC) Community fundraising program enabling individual supporters and teams to raise funds and awareness for Alpha-1 research and foundation programs.
• DNA and Tissue Bank Research repository of DNA and tissue samples maintained by the Alpha-1 Foundation to support Alpha-1-related biomedical research.
• Biomaterials Exchange Research resource providing Alpha-1 investigators with access to biomaterials to support laboratory and translational research.

Quantifiable outcome

• Over 90% of Alpha-1 affected individuals remain undiagnosed
• +3 more outcomes

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

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

• GrifolsmajorStrategic or Co-development Partner · 5 June 2026Grifols became an inaugural industry sponsor of AlphaDetect, a nonprofit detection organization powered by the Alpha-1 Foundation. The sponsorship supports free genetic testing and expands provider education and detection strategies. This builds on Grifols' three-decade commitment to the Alpha-1 community and its existing testing program that has screened more than 1.5 million people.
• Wave Life SciencesmajorStrategic or Co-development Partner · 19 May 2026Wave Life Sciences became an inaugural industry sponsor of AlphaDetect, a nonprofit subsidiary of the Alpha-1 Foundation. The sponsorship provides free genetic testing in Durham, NC laboratory and expands detection strategies and provider education efforts. This aligns with Wave Life Sciences' existing Alpha-1 pipeline program (WVE-006) and represents a strategic effort to connect patients to care and ongoing research.
• Beam TherapeuticsmajorStrategic or Co-development Partner · 13 May 2026Beam Therapeutics became an inaugural industry sponsor for AlphaDetect, a nonprofit subsidiary of the Alpha-1 Foundation. The sponsorship supports free genetic testing, healthcare providers, and scales detection efforts aligned with clinical guidelines. This builds on Beam Therapeutics' commitment to clinical research in the Alpha-1 community.
• SanofimajorStrategic or Co-development Partner · 6 May 2026Sanofi became an inaugural industry sponsor of AlphaDetect, a nonprofit organization founded by the Alpha-1 Foundation. The sponsorship supports provider education, broadens detection strategies, and expands adoption of testing recommendations outlined in clinical practice guidelines.
• The Weinbach GroupminorImplementation/ SI/ Consulting Partner · 20 February 2026The Weinbach Group established a client relationship with the Alpha-1 Foundation to improve its fundraising and outreach efforts. The agency develops and implements a communications program to expand awareness and support for A1F's initiatives.
• AlphaNetcoreStrategic or Co-development PartnerAlphaNet is a website sponsor of the Alpha-1 Foundation and provides the Big Fat Reference Guide (BFRG) patient education resource. AlphaNet coordinators provide health management services to Alphas enrolled in augmentation therapy programs.
• CSLcoreStrategic or Co-development PartnerCSL (CSL Behring) is a website sponsor of the Alpha-1 Foundation. CSL manufactures augmentation therapy products and provides educational support for the Alpha-1 community.
• TakedacoreStrategic or Co-development PartnerTakeda is a website sponsor of the Alpha-1 Foundation and supports the foundation's educational programs and detection initiatives.
• University of FloridacoreStrategic or Co-development PartnerThe Alpha-1 Foundation partners with the University of Florida to provide free, confidential genetic counseling services by phone. The partnership also includes the Alpha-1 Coded Testing (ACT) Study which provides free home testing kits.

Scale indicators6 records

Recent moves5 records

Expansion highlights5 records

Direct peers

• EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit focused on accelerating biotech innovation for rare diseases. Comparable as a rare-disease advocacy organization that engages with FDA, pharma sponsors, and patient communities to advance detection and treatment access.
• Cystic Fibrosis Foundation: The leading US nonprofit driving research, care, and detection of cystic fibrosis. Highly comparable as a disease-specific health nonprofit that funds a major research portfolio, operates a patient registry, and partners with pharmaceutical companies developing disease-modifying therapies.
• Hemophilia Federation of America: Nonprofit advocacy organization for people with hemophilia and other bleeding disorders. Comparable as a rare-disease nonprofit that operates support programs, advocates for treatment access, and partners with plasma-derived and gene therapy developers.
• The Alpha-1 Project (TAP): A wholly-owned venture philanthropy subsidiary of the Alpha-1 Foundation itself, focused on accelerating Alpha-1 therapeutic development. Direct peer and strategic affiliate operating within the same organization but with a distinct investment-oriented mission.
• American Liver Foundation: Nonprofit addressing liver disease, a major Alpha-1 manifestation. Comparable as a disease-area nonprofit that funds research, supports patients, and engages pharma, with overlapping clinical audience in Alpha-1 liver involvement.
• National Organization for Rare Disorders (NORD): Umbrella advocacy organization for rare diseases including Alpha-1. Comparable as a nonprofit that supports patient communities, drives research funding, and engages with the FDA and pharma on rare disease policy and detection initiatives.
• Immune Deficiency Foundation: Nonprofit focused on primary immunodeficiency diseases, with comparable structure: patient registry, free testing/diagnostic programs, support groups, national conference, and pharmaceutical industry sponsorship to advance research and treatment access.
• Alpha-1 Alliance: Smaller nonprofit advocacy organization specifically focused on Alpha-1 Antitrypsin Deficiency policy and patient access. Direct peer serving the same patient population with overlapping policy and access-focused mission.

Broad incumbents

• Muscular Dystrophy Association: Large disease-specific nonprofit combining research funding, patient services, and clinical care networks. Comparable operating model and sponsor mix, though MDA spans multiple neuromuscular conditions versus Alpha-1 Foundation's single-disease focus.
• American Lung Association: Major nonprofit addressing lung disease broadly, including COPD and emphysema — common Alpha-1 manifestations. Comparable as a research-funding and patient-education organization that overlaps with Alpha-1's lung-disease focus but operates at much larger disease-category scope.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/alphafriend
• Facebookfacebook.com/alphafriend
• LinkedInlinkedin.com/company/alpha-1-foundation
• Instagraminstagram.com/alpha1foundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles5 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments1 record

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Alpha-1 Foundation