Alpha-1 Foundation
The foundation three people living with Alpha-1 started in 1995 to pay for their own cure, grown into the research engine of a rare genetic disease that funds the laboratories, the trial network and even the companies that might end it.
Financial profile
Alpha-1 Foundation Inc · EIN 65-0585415 · 501(c)(3)
| Fiscal year | Total revenue | Contributions | Program services | Total expenses | Net assets | Year end |
|---|---|---|---|---|---|---|
| FY2024 | $11,614,380 | $8,897,971 | $373,667 | $10,093,036 | $41,882,888 | Jun 2024 |
| FY2023 | $10,453,299 | $8,383,940 | $368,000 | $8,547,943 | $35,505,466 | Jun 2023 |
| FY2022 | $10,890,084 | $9,050,130 | $366,000 | $6,364,206 | $32,872,896 | Jun 2022 |
| FY2021 | $10,942,439 | $7,939,893 | $240,000 | $6,256,103 | $32,235,814 | Jun 2021 |
| FY2020 | $11,171,403 | $7,621,556 | $561,000 | $7,410,910 | $24,873,571 | Jun 2020 |
| FY2019 | $10,626,839 | $8,335,339 | $644,402 | $9,439,199 | $28,159,045 | Jun 2019 |
Figures exactly as reported. A blank cell was blank on the form. The fiscal year links to the filing.
Peer societies
Five societies A1F is read alongside.
FSARA
Friedreich's Ataxia Research Alliance
A patient-founded nonprofit dedicated to curing Friedreich's ataxia by funding peer-reviewed research…
31 companies named
NF
Nephcure Foundation
A patient-founded force that turned a rare, misunderstood kidney disease into an organized cause with a…
9 companies named
BDSRA
Batten Disease Support and Research Association
A family founded organization that turns the experience of a rare fatal childhood disease into funded…
MGFA
Myasthenia Gravis Foundation of America
The foundation a mother started in 1952 when her teenage daughter was diagnosed with a rare disease that had…
18 companies named
Sjögren's Foundation
Sjögren's Foundation
The foundation a newly diagnosed patient started from a Long Island support group in 1983, grown into the…
12 companies named
Who backs A1F
Every company A1F names publicly as a supporter, exactly as published. Companies also named by other associations on Sociogene come first.
| Company | Support as published | Also named by |
|---|---|---|
| Grifols | Meeting sponsor | ACS ADLM AARC AATS AANEM +3 |
| Sanofi | Meeting sponsor | AMCP AAAAI AAD AAFP AAN +3 |
| Takeda | Meeting sponsor | AND AAAAI AAD AAFP AAN +3 |
| Beam Therapeutics | Meeting sponsor | ARM ASTCT ASGCT ASH |
| CSL | Meeting sponsor | ASTCT AST STS VNA |
| Evernorth Health ServicesPublished as Evernorth Health Services – Accredo Specialty Pharmacy | Meeting sponsor | IFEBP MGFA PHA SIIA |
| Advanced Infusion Care | Meeting sponsor | AANEM ACCP |
| CSI Pharmacy | Meeting sponsor | SIIA |
| Advanced Aeromedical | Exhibitor | Only A1F, so far |
| AIRNA | Meeting sponsor | Only A1F, so far |
| AvevoRX | Meeting sponsor | Only A1F, so far |
| Prime Medicine | Meeting sponsor | Only A1F, so far |
| Tessera Therapeutics | Meeting sponsor | Only A1F, so far |
| Wave Life Sciences | Meeting sponsor | Only A1F, so far |
Sources: 3 published lists, read October 2026
2026 A1F National Conference Exhibitors. Read October 6, 2026. Company exhibitors at the 2026 A1F National Conference.
Thank you to our 2026 A1F National Conference Sponsors. Read October 6, 2026. Company sponsors of the 2026 A1F National Conference, including the Emerging Therapies in Alpha-1 session.
Website Sponsors. Read October 6, 2026. Company sponsors of the Alpha-1 Foundation website, shown on its homepage.
Who backs A1F's peers, but not A1F
Companies named publicly by at least one of A1F's five peer societies, and not found in A1F's reviewed public records.
| Company | FSARA | NF | MGFA | Sjögren's Foundation | Peers |
|---|---|---|---|---|---|
| AmgenPublished as Amgen Rare Disease | Named | Presenting Partners | Gold Members | 3 of 4 | |
| NovartisPublished as Novartis-Logo-Warm-Black-3.2026 | Platinum Sponsor | Collaborating Partners | Platinum Member | 3 of 4 | |
| AlexionPublished as AZ_Alexion_FINAL-LOCKUP_RGB_Positive-3-Colour-003-1 | Silver Sponsor | Presenting Partners | 2 of 4 | ||
| argenxPublished as argenx (logo) | Presenting Partners | Gold Members | 2 of 4 | ||
| Biogen | Core Program Sponsor | Silver Sponsor | 2 of 4 | ||
| Boehringer IngelheimPublished as Boehringer-Ingelheim-Logo-Light-Green | Platinum Sponsor | Friend of the Foundation | 2 of 4 | ||
| Johnson & JohnsonPublished as Johnson & Johnson (logo) | Presenting Partners | Gold Members | 2 of 4 | ||
| Vor BioPublished as VOR (logo) | Supporting Partners | Bronze Members | 2 of 4 | ||
| Alexion Pharmaceuticals | Named | 1 of 4 | |||
| Amalie Oil Company | Named | 1 of 4 | |||
| ArcellxPublished as Arcellx (logo) | Supporting Partners | 1 of 4 | |||
| Arrowhead Pharmaceuticals | Named | 1 of 4 | |||
| AstraZenecaPublished as Astrazeneca-logo | Silver Sponsor | 1 of 4 | |||
| Big Timber Cattle Company | Named | 1 of 4 | |||
| Biohaven Pharmaceuticals | Named | 1 of 4 | |||
| Biologics by McKesson | Named | 1 of 4 | |||
| Bristol Myers SquibbPublished as BMS logo | Silver Members | 1 of 4 | |||
| Brown & Brown | Named | 1 of 4 | |||
| Calliditas | Silver Sponsor | 1 of 4 | |||
| Cartesian TherapeuticsPublished as Cartesian (logo) | Collaborating Partners | 1 of 4 | |||
| Catalyst PharmaceuticalsPublished as Catalyst Logo | Collaborating Partners | 1 of 4 | |||
| Columbia Food ServicePublished as Columbia Food Service Co., Inc. | Named | 1 of 4 | |||
| Cosette PharmaceuticalsPublished as Cosette Logo | Friend of the Foundation | 1 of 4 | |||
| Cullinan TherapeuticsPublished as Cullinan Logo | Bronze Members | 1 of 4 | |||
| Design Therapeutics | Named | 1 of 4 | |||
| Duncan Real Estate | Named | 1 of 4 | |||
| El Dorado Holdings | Named | 1 of 4 | |||
| EMD SeronoPublished as EMD Serono (logo) | Supporting Partners | 1 of 4 | |||
| Foley, Baron, Metzger & Juip | Named | 1 of 4 | |||
| Huffman & Huffman Brothers-In-Law | Named | 1 of 4 | |||
| ImmunovantPublished as Immunovant (logo) | Supporting Partners | 1 of 4 | |||
| InfuCareRxPublished as InfuCareRx (logo) | Supporting Partner | 1 of 4 | |||
| InsmedPublished as insmed logo | Bronze Members | 1 of 4 | |||
| Larimar Therapeutics | Core Program Sponsor | 1 of 4 | |||
| Leon Max | Named | 1 of 4 | |||
| Lexeo Therapeutics | Named | 1 of 4 | |||
| Merck KGaAPublished as MERCK (logo), merckgroup.com | Collaborating Partners | 1 of 4 | |||
| Neurocrine Biosciences | Named | 1 of 4 | |||
| NMD PharmaPublished as NMD Pharma (logo) | Supporting Partners | 1 of 4 | |||
| Notis Professional Services | Named | 1 of 4 | |||
| OtsukaPublished as Otsuka Logo | Silver Members | 1 of 4 | |||
| PTC Therapeutics | Named | 1 of 4 | |||
| Raymond James Financial | Named | 1 of 4 | |||
| RegeneronPublished as Regeneron (logo) | Supporting Partners | 1 of 4 | |||
| Resolve TherapeuticsPublished as Resolve logo | Bronze Members | 1 of 4 | |||
| Servier | Named | 1 of 4 | |||
| Shumaker, Loop & Kendrick | Named | 1 of 4 | |||
| Solid Biosciences | Named | 1 of 4 | |||
| Southern Pine Timber Products | Named | 1 of 4 | |||
| Stealth BioTherapeutics | Named | 1 of 4 | |||
| Stellar Realty | Named | 1 of 4 | |||
| Travere TherapeuticsPublished as Travere-Logo-CDTAC-2025 | Presenting Sponsor | 1 of 4 | |||
| UCBPublished as UCB (logo) | Collaborating Partners | 1 of 4 | |||
| Vanguard Protex Global | Named | 1 of 4 | |||
| Vera TherapeuticsPublished as Vera-Logo-Color | Silver Sponsor | 1 of 4 | |||
| VertexPublished as vertex-logo-current-partnership-page | Platinum Sponsor | 1 of 4 | |||
| Vertex PharmaceuticalsPublished as Vertex (logo) | Supporting Partners | 1 of 4 | |||
| Voyager Therapeutics | Named | 1 of 4 | |||
| Wilspec Technologies | Named | 1 of 4 |
The outside view
The foundation three people living with Alpha-1 started in 1995 to pay for their own cure, grown into the research engine of a rare genetic disease that funds the laboratories, the trial network and even the companies that might end it.
- Authority
- Build
- Outward
- Operational
Their shape
The Frontier
At home at the edge of what comes next.
The Frontier is restless and pioneering, always testing what comes next. Its gift is innovation and adaptability, its challenge is focus, and not leaving its longtime members behind.
Also reads toward The Movement and The Citadel.
Strengths
Not an official page of Alpha-1 Foundation. Sociogene does not consult. Everything here comes from public sources, dated and linked. Something wrong here? Tell us what we missed.