AlphaNet
AlphaNet is a 501(c)(3) nonprofit founded in 1995 that provides free, peer-led disease management, education, and care coordination to individuals with Alpha-1 Antitrypsin Deficiency in the US and Canada, funded through contributions and pharmaceutical partnerships.
- Company typePrivate
- Founded1995
- HeadquartersCoral Gables, United States
- Headcount11–50
- GTM typeB2C
- OfferingServices
What AlphaNet does
AlphaNet, Inc. is a not-for-profit 501(c)(3) health-management corporation headquartered in Coral Gables, Florida, founded in 1995 by three individuals with Alpha-1 Antitrypsin Deficiency. The organization's purpose is to improve quality of life for people affected by Alpha-1, one of the most common serious genetic disorders worldwide, by delivering peer-led disease management support, comprehensive patient and clinician education, and care coordination services — all provided at no cost to subscribers. Its core offering is the AlphaNet Coordinator model: trained individuals who themselves have Alpha-1 and are assigned to subscribers by geography and prescribed augmentation therapy, providing one-on-one guidance, assistance with infusion supplies, and connection to the broader Alpha-1 community. The product portfolio centers on the Subscriber Portal, the Big Fat Reference Guide (BFRG) — described as the most comprehensive living guide to Alpha-1 on the web — the REACH program, the Alpha-1 Disease Management and Prevention Program, a Continuing Nursing Education program for healthcare professionals, and the Alpha-1 Alleles Site for genetic-type education. Governance is structurally tied to the patient community, with a board requirement that at least 50% of directors be diagnosed Alphas, carriers, or immediate family members.
The organization operates a portfolio of digital properties (alphanet.org, subscriber.alphanet.org, bfrg.alphanet.org, professional.alphanet.org, alpha1alleles.com) and maintains long-standing core partnerships with the three manufacturers of FDA-approved augmentation therapies — Grifols (Aralast), CSL Behring, and Takeda — as well as with the Alpha-1 Foundation, the research and advocacy sister organization co-founded alongside AlphaNet in 1995. As of 2026, AlphaNet had contributed more than $73 million cumulatively to the Alpha-1 Foundation (having crossed $50 million in 2017), evidencing sustained financial throughput between the two co-founded entities. The organization does not charge subscribers; it is funded through contributions and partnerships, with services distributed primarily via direct-to-patient digital channels across the United States and, more recently, Canada.
Operationally, AlphaNet runs a lean staff in the 11–50 range, led by President and CEO Mark Delvaux and Senior Medical Director Robert Sandhaus (MD, PhD, FCCP), with a separately constituted medical team including Senior Medical Director Charlie Strange (MD). Its go-to-market is content- and community-led rather than sales-led: educational blog posts, a long-running newsletter (the AlphaNetter, with archives dating to 1999), organic social presence on Facebook, Instagram, and LinkedIn, and dedicated professional-education channels for clinicians. There are no disclosed funding rounds, acquisitions, paid customer relationships, app products, or AI-driven capabilities — consistent with a mission-driven nonprofit whose competitive position rests on community ecosystem, accumulated clinical content, and pharma-aligned coordinator distribution rather than on commercial scale or technology differentiation.
AlphaNet firmographics
Firmographics- Name
- AlphaNet
- Legal name
- AlphaNet, Inc.
- Website
- https://alphanet.org
- Company type
- Private
- Founded year
- 1995
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- AlphaNet is a 501(c)(3) nonprofit founded in 1995 that provides free, peer-led disease management, education, and care coordination to individuals with Alpha-1 Antitrypsin Deficiency in the US and Canada, funded through contributions and pharmaceutical partnerships.
- Ownership category
- akta.pro rank
AlphaNet industry classification
Industry- Product category
- Rare Disease Patient Support Services
- NAICS
- Other Individual and Family Services (624190)
- akta.pro primary industry
- Nephrology Telemedicine Platforms (HLALAGAI)
Keywords
Where AlphaNet is headquartered
LocationHeadquarters
- HQ city
- Coral Gables
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
AlphaNet business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Infrastructure
Distribution channels4 records
Marketing channels6 records
AlphaNet product offering
Product offeringCore offering
AlphaNet is a not-for-profit 501(c)(3) health management corporation that provides free disease management, peer support coordination, and educational resources to individuals diagnosed with Alpha-1 Antitrypsin Deficiency. The organization's core offering centers on the AlphaNet Coordinator program—trained peer guides who themselves have Alpha-1 and provide one-on-one support, education, and assistance with augmentation therapy and disease management—supplemented by the Big Fat Reference Guide, the Subscriber Portal, and the REACH and Disease Management and Prevention programs.
Product overview
AlphaNet is a not-for-profit health management corporation (501(c)(3)) founded in 1995 by three individuals with Alpha-1, dedicated to improving the quality of life for those affected by Alpha-1 Antitrypsin Deficiency. The organization operates as a unified platform combining community support, educational resources, and disease management services. The core offerings include the AlphaNet Community network connecting patients to AlphaNet Coordinators (who themselves have Alpha-1), the Big Fat Reference Guide (BFRG) as the primary informational resource, and the Subscriber Portal for member access. These are supplemented by the Alpha-1 Disease Management and Prevention Program, REACH Program, and Continuing Nursing Education Program. AlphaNet also provides the Alpha-1 Alleles Site and Professional Education resources, working closely with the Alpha-1 Foundation (its sister organization founded the same year) which focuses on research and advocacy.
Differentiator
Problem solved
Functional benefit
Brands
- AlphaNet Coordinators: Peer support program where coordinators who have Alpha-1 themselves guide and educate other Alphas on their journey with Alpha-1.
- Big Fat Reference Guide (BFRG)
- REACH Program
Products and services
- Alpha-1 Disease Management and Prevention Program
Companies that use AlphaNet
Customer profileSegments2 records
Ideal customer profiles2 records
AlphaNet technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
AlphaNet partnerships and signals
Strategic signalPartnerships
Four partnerships are on record, tiered core.
- Alpha-1 FoundationcoreThe Alpha-1 Foundation and AlphaNet were co-founded in 1995 by three individuals with Alpha-1. While AlphaNet focuses on connecting Alphas with peer support and quality of life improvements, the Alpha-1 Foundation focuses on research, testing, advocacy, and community outreach. To date, AlphaNet has contributed more than $73 million to the Alpha-1 Foundation to support Alpha-1 research and programs. The organizations remain closely connected.
- GrifolscoreGrifols is a pharmaceutical company that manufactures augmentation therapy products for Alpha-1 patients, including Aralast. AlphaNet's coordinators assist subscribers with facilitating delivery of their Aralast infusion and infusion supplies, and maintain quality assurance related to these products. Grifols appears as a trusted partner logo on AlphaNet's website.
- CSL BehringcoreCSL Behring is a pharmaceutical company involved in alpha-1 antitrypsin deficiency treatments. AlphaNet coordinates with specialty pharmacy providers to assist subscribers with their treatment supplies. CSL Behring appears as a trusted partner logo on AlphaNet's website.
- TakedacoreTakeda is a pharmaceutical company that manufactures alpha-1 antitrypsin deficiency treatment products. AlphaNet appears as a trusted partner on Takeda's partner network. Takeda appears as a trusted partner logo on AlphaNet's website.
Scale indicators3 records
Recent moves6 records
Expansion highlights5 records
AlphaNet competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): Umbrella advocacy organization for the rare-disease community in the US, providing education, advocacy, and a research grant program. Broader in scope than AlphaNet but operates with the same non-profit, pharma-funded, patient-support ethos across the same donor and partner ecosystems.
- American Lung Association: Large, broad-incumbent lung-health advocacy organization that touches many of the same clinicians and patient pathways as AlphaNet (pulmonologists, respiratory therapists, COPD/emphysema patients who may also have Alpha-1). Provides a sense of scale and capability ceiling AlphaNet operates beneath.
- Cystic Fibrosis Foundation: A larger and better-resourced rare-genetic-disease advocacy organization that combines research funding, patient support, care-center accreditation, and pharma partnership at scale. Operates the same 'disease-modifying foundation + patient support' model AlphaNet uses for a much larger patient population.
Direct peers
- COPD Foundation: Patient-focused organization for COPD and related chronic lung diseases, including alpha-1-related emphysema. Runs peer support, educational content, and pharma-partnered programming highly comparable to AlphaNet's disease-management and education model.
- Pulmonary Fibrosis Foundation: Patient-support and advocacy organization for another rare pulmonary disease, offering peer mentoring, educational resources, disease management support, and pharma partnerships — a directly comparable operating model for a similarly small rare-disease population.
- Immune Deficiency Foundation: Serves patients with primary immunodeficiency diseases via peer support networks, clinician resources, and patient education — closely mirroring AlphaNet's coordinator-driven, pharma-partnered, portal-based model for a rare chronic condition.
- Alpha-1 Foundation: Sister organization co-founded in 1995 by the same three Alphas; focused on Alpha-1 research, advocacy, and testing while AlphaNet focuses on patient support. Operates in the same patient population with complementary programs, making it the closest functional peer.
- National Hemophilia Foundation: Patient advocacy and education organization for people with bleeding disorders, offering peer support, professional education, and chapter-based local engagement — a structural and operational peer for AlphaNet's coordinator/community model in another rare genetic condition.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights6 records
Customer concentration
AlphaNet social profiles
Digital presenceAlphaNet financial estimates
Financial estimateRevenue estimate
Valuation estimate
AlphaNet leadership team
Management profileNumber of profiles
Profiles16 records
AlphaNet funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
AlphaNet M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about AlphaNet
What does AlphaNet do?
AlphaNet is a not-for-profit 501(c)(3) health management corporation that provides free disease management, peer support coordination, and educational resources to individuals diagnosed with Alpha-1 Antitrypsin Deficiency. The organization's core offering centers on the AlphaNet Coordinator program—trained peer guides who themselves have Alpha-1 and provide one-on-one support, education, and assistance with augmentation therapy and disease management—supplemented by the Big Fat Reference Guide, the Subscriber Portal, and the REACH and Disease Management and Prevention programs.
Is AlphaNet a public or private company?
AlphaNet is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was AlphaNet founded?
AlphaNet was founded in 1995. It employs 11 to 50 people.
Where is AlphaNet based?
AlphaNet is headquartered in Coral Gables, United States, in the North America region.
Who are AlphaNet's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), American Lung Association and Cystic Fibrosis Foundation. Direct peers are COPD Foundation, Pulmonary Fibrosis Foundation, Immune Deficiency Foundation, Alpha-1 Foundation and National Hemophilia Foundation.
Does AlphaNet have an API?
No public API is recorded for AlphaNet.
What industry is AlphaNet in?
AlphaNet's product category is Rare Disease Patient Support Services. Its primary akta.pro industry code is HLALAGAI, Nephrology Telemedicine Platforms. Its NAICS code is 624190.