The Alexion Charitable Foundation Inc
The Alexion Charitable Foundation (ACF) is an independent foundation established by Alexion, AstraZeneca Rare Disease on Rare Disease Day in February 2020. Based in Boston, Massachusetts, the Foundation serves as the charitable giving arm of Alexion and is dedicated to supporting individuals, caregivers, and families affected by rare diseases.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$7.9M
-11.6% YoY
Annual Giving
$810K
-59.9% YoY
Grant Count
8
-69.2% YoY
Avg Grant Size
$101K
+30.2% YoY
Mission & Focus Areas
The Foundation's mission is to address health disparities within and among the rare disease community. ACF invests in projects to ensure that all underserved communities have equitable pathways to the care, services, and resources they need to live healthier lives.
The Foundation operates through its signature program, Rare Belonging®, which focuses on:
- Advancing emotional well-being and educational opportunities for those living with or affected by rare disease
- Providing relief for critical needs within the rare disease community
- Supporting community-powered, patient-centered solutions
- Addressing unmet needs in underserved and low-resource settings globally
- Meeting pressing needs in communities where Alexion employees live and work
Grantmaking
In June 2020, the Foundation announced $1.1 million in initial grants aligned with the Rare Belonging® focus, including support to NORD and other leading nonprofits serving the rare disease community.
Grant Range
& Activity:**
How to Apply
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Geographic Focus
Where this funder awards grants
The Foundation funds globally, with particular emphasis on:
- Underserved and low-resource communities worldwide
- Communities where Alexion has a major presence
- International partnerships addressing rare disease disparities
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
- Assets: $7.9 million (as of 2024)
- IRS Status: 501(c)(3) organization
- EIN: 83-1065602
- Staffing: Limited paid staff; board members serve with minimal hours
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $7,934,584 | $8,973,352 | $11,099,744 |
| Revenue | $1,736 | $1,912 | — |
| Expenses | $1,040,504 | $2,128,304 | $737,041 |
| Qualifying Distributions | $1,040,477 | $2,128,304 | $737,041 |
| Net Investment Income | $1,736 | $1,912 | — |
| Distributable Amount | $425,829 | $471,327 | $560,727 |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 8 recipients in 2024
Grant Size Distribution
106 grants across all recorded years
Giving History
Grant recipients and amounts by year
No grants recorded for .
Leadership & Key People
Leadership team and compensation from IRS filings
Board Members & Officers (as of 2024):
- Tamar Thompson, Chairperson & Board Member
- Samantha Gilman, President (as of April 2024)
- Michael Elloian, Treasurer & Board Member
- Simu Thomas, Clerk & Board Member
- Ruth Diazaraque, Board Member
- Shane Doyle, Board Member
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| SAMANTHA GILMAN | PRESIDENT (AS OF 04/24) | 3 | — |
| TAMAR THOMPSON | CHAIRPERSON & BOARD MEMBER | 0.5 | — |
| SIMU THOMAS | CLERK & BOARD MEMBER | 0.5 | — |
| MICHAEL ELLOIAN | TREASURER & BOARD MEMBER | 2 | — |
| RUTH DIAZARAQUE | BOARD MEMBER | 0.5 | — |
| SHANE DOYLE | BOARD MEMBER | 0.5 | — |
Recent News & Activity
Recent developments and announcements
The Foundation has demonstrated active grantmaking through 2025, with recent announcements including:
Alexion Charitable Foundation Supports iHope Genetic Health Through Its\**June 2025:** Grant to Genetic Alliance for the iHope Genetic Health program, advancing equity in rare disease diagnosis through global partnerships for free genomic testing
Alexion Charitable Foundation Supports iHope Genetic Health Through Its\Ongoing support for mental health services, patient transportation, and innovative treatment development for rare disease communities
Alexion Charitable Foundation Supports iHope Genetic Health Through Its\Continued focus on addressing disparities in diagnosis and care access for individuals living with rare diseases in low-resource settings
The Foundation published its inaugural annual report covering grantmaking efforts from February 2020 through December 2023, documenting the collective impact of its charitable partnerships in charting more equitable pathways to care and resources for the rare disease community.
Alexion Charitable Foundation Supports iHope Genetic Health Through Its\Subject Areas
Focus areas based on grantmaking activity
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Data last updated April 2026. Sourced from IRS Form 990-PF filings. Research dossier generated April 2026.
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