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
Under IRS private-foundation payout rules, The Alexion Charitable Foundation Inc reported a distributable amount of $426K for 2024 — the minimum it must pay out in qualifying distributions.
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
Among its reported 2024 grants, the largest include Give an Hour ($200,000), Life Literacy Canada ($150,000), Patient Airlift Services (pals) ($150,000).
| Recipient | Purpose | Amount |
|---|---|---|
| ANGEL FLIGHT OF NEW ENGLAND NORTH ANDOVER, MA | ONGOING GRANT IN SUPPORT OF ANGEL FLIGHT NES MISSION/FLIGHT COORDINATION: HEALING JOURNEYS FOR RARE DISEASES PROGRAM WILL ALLOW THEM TO CONTINUE THEIR SUPPORT OF PATIENT AND OUTREACH ACTIVITIES, ENABLING MORE PATIENTS AND FAMILIES TO RECEIVE SUPPORT IN ACCESSING AERIAL TRANSPORTATION FOR MEDICAL TREATMENTS NOT AVAIALABLE IN THEIR GEOGRAPHICAL AREAS. PARTICIPATING IN EXPANDED MARKETING TO VARIOUS RARE/ULTRA-RARE GROUPS TO PARTNER AND EDUCATE THEM ON ANGEL FLIGHT NES FREE AIR TRANSPORTATION SERVICES IS PIVOTAL TO CONTINUED GROWTH. | $100,000 |
| BOSTON CHILDREN'S HOSPITAL BOSTON, MA | THE GRANT WILL SUPPORT THE PROJECT TITLED RAINBOW/KASA PROGRAM WHICH IS BOSTON CHILDREN'S HOSPITAL'S PRIMARY-CARE MEDICAL HOME FOR HIGHLY COMPLEX CHILDREN, OVER 50% OF WHOM HAVE RARE DISEASES. THE DEMAND FOR THE RAINBOW/KASA PROGRAM HAS GROWN SUBSTANTIALLY IN RECENT YEARS DUE TO HIGH QUALITY CARE COORDINATION SERVICES AND ABILITY TO MANAGE A POPULATION THAT OTHER MEDICAL HOMES CANNOT. THIS INITIATIVE - IMPROVING ACCESS TO COMPLEX PRIMARY CARE SERVICES - WILL ALLOW TO ENSURE MAXIMAL ACCESS FOR NEW PATIENTS TO THE PROGRAM, ENSURING THAT NEW PATIENTS CAN BE SEEN QUICKLY AND APPROPRIATELY WITH FULL SOCIAL AND MEDICAL ASSESSMENTS AND CONNECTION TO HOME AND HOSPITAL-BASED MEDICAL SUPPORTS. IN ADDITION, THIS INITIATIVE WILL ALLOW TO INCREASE OUR URGENT CARE SERVICES FOR RAINBOW/KASA PATIENTS, ENSURING THAT MORE PATIENTS CAN BE SEEN EACH DAY BY PROVIDERS EXPERT IN COMPLEX CARE. | $100,000 |
| GIVE AN HOUR CLARKSBURG, MD | THE GRANT WILL SUPPORT THE PROJECT TITLED CARE FOR CAREGIVERS: CARECONNECT: STRENGTHENING PEER & CLINICAL MENTAL HEALTH SUPPORT FOR RARE DISEASE CAREGIVERS PROGRAM WHICH AIMS TO STRENGTHEN THE CONTINUUM OF MENTAL HEALTH SUPPORT FOR CAREGIVERS WITHIN RARE DISEASE COMMUNITIES BY EXPANDING BOTH NONCLINICAL AND CLINICAL RESOURCES. THROUGH PARTNERSHIPS WITH RARE-SERVING ORGANIZATIONS, WE WILL ENHANCE CAREGIVER SUPPORT SYSTEMS WHILE DELIVERING SPECIALIZED TRAINING TO MENTAL HEALTH PROFESSIONALS TO ADDRESS THE COMPLEX EMOTIONAL AND PSYCHOLOGICAL CHALLENGES CAREGIVERS FACE. ADDITIONALLY, CRISIS SUPPORT PROTOCOLS WILL BE ESTABLISHED TO ENSURE SWIFT, EFFECTIVE INTERVENTIONS DURING EMERGENCIES, FOSTERING LONG-TERM RECOVERY AND RESILIENCE. | $200,000 |
| LIFE LITERACY CANADA | THE GRANT WILL SUPPORT THE PROJECT TITLED ABC HEALTH MATTERS: MANAGING RARE DISEASES AND CHRONIC HEALTH ISSUES FOR THE FOLLOWING PURPOSE: ABC HEALTH MATTERS IS AN INTRODUCTORY HEALTH LITERACY PROGRAM THAT EMPOWERS CANADIANS TO MANAGE THEIR HEALTH MORE EFFECTIVELY BY INCREASING THEIR CONFIDENCE WHEN TALKING ABOUT AND MAKING DECISIONS REGARDING HEALTH ISSUES WITH FAMILY, FRIENDS, AND HEALTH PROFESSIONALS. ABC SEEKS TO DEVELOP A NEW STREAM OF THE ABC HEALTH MATTERS PROGRAM DESIGNED TO MEET THE NEEDS OF FAMILIES IMPACTED BY RARE DISEASES AND CHRONIC HEALTH ISSUES. THE PROGRAM WILL INCLUDE TWO NEW TARGETED WORKBOOKS, COURSES ON THEIR CUSTOM LEARNING PLATFORM (THE ABC SKILLS HUB), OUTREACH TO COMMUNITY ORGANIZATIONS AND HEALTH CARE PROFESSIONALS, A DEDICATED PROGRAM LANDING PAGE, AND COMMUNICATIONS AND PROMOTIONAL ACTIVITIES TO RAISE AWARENESS ABOUT PROGRAM OFFERINGS. | $150,000 |
| PATIENT AIRLIFT SERVICES (PALS) FARMINGDALE, NY | THE GRANT WILL SUPPORT THE PALS MISSION OF HELPING PEOPLE WITH TRANSPORTATION NEEDS FOR PEOPLE AFFECTED BY RARE DISEASES. PALS ARRANGES FREE AIR TRANSPORTATION FOR INDIVIDUALS LIVING WITH OR AFFECTED BY RARE DISEASE TO ACCESS OUT-OF-TOWN MEDICAL DIAGNOSIS, TREATMENT, AND FOLLOW-UP, AS WELL AS TO ATTEND RARE DISEASE CONFERENCES AND SOCIAL/EDUCATION EVENTS THROUGHOUT THE US. THE GRANT WILL FUND THE PROVISION OF ROUGHLY 450+ FLIGHTS NATIONALLY FOR RARE DISEASE PATIENTS, CAREGIVERS, AND FAMILIES (INCLUDING GROUND TRANSPORTATION BETWEEN THE AIRPORT AND TREATMENT DESTINATION), AS WELL AS OUTREACH TO PROMOTE THE AVAILABILITY OF THESE SERVICES TO THE RARE DISEASE COMMUNITY. | $150,000 |
| STARVISTAS EARLY CHILDHOOD PROGRAMMING SAN CARLOS, CA | THE GRANT WILL SUPPORT THE PROJECT TITLED, EARLY CHILDHOOD PROGRAMMING: EARLY CONNECTIONS FOR NURTURING RESILIENT FAMILIES AND THRIVING CHILDREN WHICH COMMITS TO SUPPORTING FAMILIES WITH YOUNG CHILDREN, HELPING THEM OVERCOME LIFE'S CHALLENGES SUCH AS: MITIGATE THE EFFECTS OF FAMILY RISK FACTORS, TRAUMA, AND TOXIC STRESS. ENHANCE PARENTS AND CAREGIVERS' CAPACITY AND KNOWLEDGE TO CARE FOR THEIR CHILDREN. MENTAL HEALTH SERVICES FOR CHILDREN AND CAREGIVERS. EDUCATIONAL WORKSHOPS, TRAINING AND CONSULTATION FOR CHILDCARE PROVIDERS TO ENSURE THEY HAVE THE NECESSARY KNOWLEDGE AND SUPPORT ADDITIONALLY, PROVIDING SERVICES THROUGH VARIOUS MEANS, INCLUDING IN PERSON AT LOCATIONS ACROSS THE COUNTY, IN CLIENT HOMES, VIA PHONE, AND VIRTUALLY, TO INCREASE ACCESSIBILITY. | $10,000 |
| THE AKARI FOUNDATION SAN ANTONIO, TX | THE GRANT WILL SUPPORT THE PROJECT TITLED RARE DISEASE SUPPORT INITIATIVE FOR THE PURPOSE ENHANCING ACCESS TO CARE FOR HISPANIC FAMILIES AFFECTED BY RARE DISEASES BY ADDRESSING CRITICAL BARRIERS SUCH AS MOBILITY, LANGUAGE, AND FINANCIAL CONSTRAINTS. THE PROGRAM WILL PROVIDE ESSENTIAL RESOURCES, INCLUDING TRAVEL ASSISTANCE, EDUCATIONAL INITIATIVES, AND CULTURALLY COMPETENT SUPPORT SERVICES, ENSURING THAT UNDERSERVED POPULATIONS RECEIVE TIMELY DIAGNOSES AND EQUITABLE ACCESS TO HEALTHCARE. BY LEVERAGING THEIR EXPERTISE IN SERVING THE HISPANIC COMMUNITY, AKARI FOUNDATION AIMS TO EMPOWER FAMILIES AND IMPROVE HEALTH OUTCOMES THROUGH TARGETED OUTREACH AND ADVOCACY EFFORTS. | $25,000 |
| THE CHILDREN'S INN AT NIH BETHESDA, MD | THE CHARITABLE PURPOSE OF THE GRANT IS TO SUPPORT THE CAMPAIGN FOR THE CHILDREN'S INN AT NIH, A CAPITAL CAMPAIGN TO TRANSFORM ITS RESIDENTIAL FACILITY INTO A STATE-OF-THE-ART ENVIRONMENT TO SERVE MORE YOUNG PEOPLE AND THEIR FAMILIES, KEEP PACE WITH THE NIH'S GROWTH AND DISCOVERY, AND MEET THE CHANGING NEEDS OF RESIDENTS AND PEDIATRIC MEDICAL RESEARCH. | $75,000 |
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
Frequently Asked Questions
What does The Alexion Charitable Foundation Inc fund?
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 cri…
How do I apply for a grant from The Alexion Charitable Foundation Inc?
**Grant Size & Activity:** • Median grant size: $100,000 • Grant range: $10,000 to $200,000 • Recent grant activity documented in 2024 filings **Recent Grants & Partnerships:** • Genetic Alliance: Support for the iHope Genetic Health program, providing comprehensive, no-cost genetic testing for undiagnosed children from underserved communities worldwide • SkyHope: Support for free flights for rare disease patients • Give an Hour: Grant providing mental health support and healing services • n-Lo…
Where does The Alexion Charitable Foundation Inc make 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
What size grants does The Alexion Charitable Foundation Inc award?
In 2024, The Alexion Charitable Foundation Inc awarded 8 grants totaling $810K — an average of about $101K per grant, based on its IRS Form 990 filings.
How much is The Alexion Charitable Foundation Inc required to give away each year?
Private foundations must generally distribute about 5% of their assets annually. For 2024, The Alexion Charitable Foundation Inc reported a distributable amount of $426K on its IRS Form 990-PF — the minimum it must pay out in qualifying distributions.
What is The Alexion Charitable Foundation Inc's EIN?
The Alexion Charitable Foundation Inc's EIN (Employer Identification Number) is 83-1065602. IRS Form 990 filing data is available on this page for 2020–2024.
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Data last updated June 2026. Sourced from IRS Form 990-PF filings. Research dossier generated April 2026.
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