The Alexion Charitable Foundation Inc
The Alexion Charitable Foundation is a private foundation based in Boston, Massachusetts. It supports programs addressing health disparities in the rare disease community and seeking to improve underserved communities’ access to care, services, and resources.
The Alexion Charitable Foundation Inc at a glance
In short: The Alexion Charitable Foundation Inc gave $1.1M across 12 grants in 2025 (avg $91K), top state Connecticut. 75% of 2025 grantees were new. Source: 2025 IRS Form 990-PF.
- Annual giving (2025)
- $1,090,670
- +34.7% vs 2024
- Grants made (2025)
- 12
- +50.0% vs 2024
- Average grant
- $90,889
- -10.2% vs 2024
- Median grant
- $95,000
- Total assets
- $6,689,766
- -15.7% vs 2024
- New grantees (estimate)
- 75% first-time grantees (9 of 12, 2025; small sample)
- Primary geography
- Connecticut (20% of itemized 2025 grant dollars)
- Latest 990 filing
- Form 990-PF, 2025 View filing
Data from IRS Form 990-PF, 2025; updated October 2026. New grantees are estimated by matching recipient names across years (methodology).
How to apply to The Alexion Charitable Foundation Inc
- How to Apply
-
The 2025 filing says the Foundation makes contributions to both preselected organizations and unsolicited charitable organization requests, and that it does not restrict giving to preselected organizations. It describes a formal application process through the Foundation’s website. The Foundation’s website says interested organizations may submit a Preliminary Request Form and should review the grant guidelines and criteria; participation does not guarantee funding.
- Review Cycle
- The 2025 filing states that there are no deadlines. The website also announced a global open call for August 3–31, 2026; that cycle has passed.
- Deadline
- The 2025 filing states that there are no deadlines.
- Contact
Application contact: The Alexion Charitable Foundation I
Mailing address: 121 Seaport Boulevard, Boston, MA 02110
Phone: (475) 230-3530
Website: https://alexion.com
Application details from Grantable's research on the foundation's public materials; confirm on its website before applying.
Who The Alexion Charitable Foundation Inc funds
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2025
The largest 2025 recipient was Angel Flight of New England Inc ($150K). Together the top 10 received $1.0M.
Grant Size Distribution
97 grants across all recorded years
The most common grant size was under $50K: 60 grants of 97 (62%).
Geographic Focus
Where this funder awards grants
The Foundation’s website describes its partnerships as global and reports charitable partners in 15 countries. Its 2025 grants included recipients in the United States, Canada, and the United Kingdom. U.S. recipients listed in the filing include organizations in Connecticut, Massachusetts, Washington, D.C., Maryland, California, and Georgia.
Grant Distribution by State
Share of 2025 grant dollars across all 12 itemized grants.
Cities
Is The Alexion Charitable Foundation Inc open to new grantees?
75%
first-time grantees, 2025
In 2025, 9 of 12 grantees (75%) were first-time recipients. With only 12 grantees, that is a small sample: one grantee more or less moves the share by about 8 points. First grants averaged $82K; repeat grants $117K. How we count
Medians: $90K first-time, $125K repeat.
- 8% of 2025 grantees were also funded in 2024. Method
- Giving grew 69% from 2022 to 2025. Method
- In 2025 it paid out 351% of its IRS minimum distribution (the 5% rule). Method
Estimate from itemized grant lists in IRS Form 990-PF filings (2020–2025). Recipient names are matched across years, so a renamed or misspelled grantee can look new; grants to individuals are left out. Methodology.
Giving History
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $644K (2022) to $2.2M (2020). In 2025 it made 12 grants totaling $1.1M.
Grants by year
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| Angel Flight of New England Inc North Andover, MA | The grant will support the project titled mission/flight coordination: healing journeys for patients battling rare diseases to coordinate free air and ground transportation so patients can access specialized medical care and treatment outside of their geographic area to treat and battle illnesses and other health afflictions including rare and ultra-rare diseases that could be life threatening if the patient does not receive the specialized care that they need. With the consolidation of healthcare entities, we are having more and more patients turn to us for help to access specialized care and treatment that is not available to them in their geographic area. We provide our services for as long and as often as a patient needs our help. Since 1996, we have scheduled over 108,000 patient/passenger missions who have traveled more than 16 million to more than 750 medical facilities. Distance should never be an obstacle for patients to access the medical care they need and deserve. | $150,000 |
| Roald Dahl's Marvelous Children's Charity | The grant will support the project titled bridging barriers to care: expanding specialist support for children with rare and complex medical conditions in the uk for the following purpose enhance the diagnostic journey and access to specialised care for children living with rare and complex medical conditions. The support will enable the deployment of a new cohort of roald dahl nurse specialists who focus on children with medical complexities (CMC) over a 12-month period, ensuring that children with CMC and those living with rare diseases receive expert, coordinated care tailored to their unique needs. The program will offer professional development opportunities for existing roald dahl nurses, equipping them with advanced skills to manage the complexities of rare diseases and also support the delivery of educational and skill-building workshops, alongside the distribution of essential resources to families. | $150,000 |
| Connecticut Children's Medical Center Foundation Inc Hartford, CT | The grant will support the project titled improving timely access to care for infants with out-of-range genetic newborn screening (NBS) aims to implement and evaluate a comprehensive educational and social support intervention for families who receive notifications of out-of-range genetic newborn screening (NBS) results. The network's NBS registered nurses (NBS rns) will educate and support families, conduct an electronic social determinants health (SDOH) assessment, provide families with the option to be connected to a personalized electronic health portal (mychart), and have a telehealth visit with an NBS genetic counselor if indicated. This initiative aims to enhance timely access to care by addressing barriers faced by this vulnerable population. | $140,000 |
| Willow Foundation | The grant will support the project titled special day services for young adults living with rare diseases and rare cancers across the uk in 2025 for the following purpose: the project is dedicated to give young adults living with rare diseases and rare cancers, and their caregivers/family much-needed time out from the reality of living with a rare disease. We do this by providing enjoyable and inclusive memory-making experiences which give hope, promote resilience and enhance coping strategies. Our disease agnostic approach means we aim to reach young adults with as wide a range of diseases as possible by promoting our services across medical settings and patient advocacy groups across the uk. | $125,000 |
| Caregiver Action Network Washington, DC | The grant will support the project titled identifying, reaching and supporting caregivers of rare disease patients in diverse and underserved patient populations for the following purpose leading a direct-to-caregiver initiative aimed at expanding access to genetic testing and reducing the time to diagnosis for patients with rare conditions. Can's approach emphasizes the crucial role of caregivers in the diagnostic process and targets zip codes with known healthcare disparities to reach diverse and underserved populations. They partner with 600+ patient advocacy groups (PAGS) to empower patients and caregivers. By enabling them to easily share their diagnostic journeys through an online chatbot, can aims to simplify the navigation of the testing process. | $100,000 |
| Make-a Wish Canada | The grant will support the project titled the first gift of its kind | make-a-wish canadas rare and genetic disease fund for the following purpose: to grant between 250 to 300 wishes to children with rare and genetic diseases this year, a shocking 70% increase from last year. | $100,000 |
| ABC Life Literacy Canada | The grant will support the project titled abc health matters: managing rare diseases and chronic health issues which 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. Renewed support from the alexion charitable foundation would allow us to add additional resources to the new stream of the abc health matters program which was designed to meet the needs of families impacted by rare diseases and chronic health issues. The program will include one new targeted workbook, workshops, outreach to community organizations and health care professionals, a dedicated program landing page, and communications and promotional activities to raise awareness about program offerings, with special attention during october's health literacy month. | $90,000 |
| Seriousfun Children's Network Norwalk, CT | The grant will support the project titled mental health & mental wellness programming at seriousfun camps to address and support the mental health needs across our global network of camps, specifically our rare disease camper community. Grant funding will continue to focus on mental health interventions for camper and family programming, mental health professional positions at camp, and mental health trainings and certifications for camp staff. | $75,000 |
| Courageous Parents Network Newton, MA | The grant will support the project titled anticipatory guidance in multiple languages for families of children with severe neurological impairment via cpn's digital tool. Neurojourney is an educational resource for families and clinicians navigating the ever-evolving needs of a child with severe neurological impairment (SNI). It explores the interconnected medical complications common in pediatric neuro-degenerative rare diseases. Designed as an anticipatory guidance tool for parents, the content is organized in phases as they might occur in the illness journey. The resource also includes perspectives on the social and emotional experiences of families as they care for their child, all rooted in the principles of palliative care. Neurojourney is available in both written and audio formats in english, spanish and french. With this funding, neurojourney is also available for affected families speaking portuguese, arabic or chinese soon. | $57,300 |
| Genetic Alliance Damascus, MD | The grant will support the project titled ihope for which aims to revolutionize bridging the genetic medicine gap and provide next-generation care to those who need it most. Using advanced genomic sequencing technology and working with local healthcare providers, genetic alliance can diagnose genetic conditions early and accurately. The primary goal is to provide precision genetic diagnoses to children with previously undiagnosed conditions, enabling targeted treatments that improve quality of life, reduce suffering, and increase survival rates. Establishing a framework for genetic health services in under-resourced areas will ensure long-term sustainability within local healthcare systems. | $53,370 |
Ready to take the next step with The Alexion Charitable Foundation Inc?
Financial History
Multi-year comparison from IRS filings
The Foundation files Form 990-PF as a private foundation. Figures below are reported by filing year.
| Filing year | Total Assets | Revenue | Expenses | Grants paid | Grants | Qualifying Distributions | Net Investment Income | Distributable Amount |
|---|---|---|---|---|---|---|---|---|
| 2025 | $6,689,766 | $1,436 | $1,246,254 | $1,090,670 | 12 | $1,245,754 | $1,436 | $355,135 |
| 2024 | $7,934,584 | $1,736 | $1,040,504 | $810,000 | 8 | $1,040,477 | $1,736 | $425,829 |
| 2023 | $8,973,352 | $1,912 | $2,128,304 | $2,022,219 | 26 | $2,128,304 | $1,912 | $471,327 |
| 2022 | $11,099,744 | — | $737,041 | $643,998 | 18 | $737,041 | — | $560,727 |
| 2021 | $11,836,785 | $2,000,000 | $2,161,186 | $2,089,063 | 33 | $2,160,785 | — | $538,072 |
| 2020 | $11,997,971 | $4,814,782 | $2,397,362 | $2,165,000 | 21 | — | $20,855 | $448,904 |
| 2019 | $9,580,551 | $4,737,025 | $156,447 | — | — | — | $30,578 | $292,805 |
Under IRS private-foundation payout rules, The Alexion Charitable Foundation Inc reported a distributable amount of $355K for 2025 — the minimum it must pay out in qualifying distributions.
Research compiled by Grantable AI from public sources. Last updated October 2026.
Mission & Focus Areas
The Foundation’s stated mission is to address health disparities within and among the rare disease community, with a focus on equitable pathways to care, services, and resources for underserved communities. Its website lists funding priorities that include early symptom recognition and access to diagnostic testing; technology that can improve diagnostic accuracy and speed; support for patients and caregivers through the diagnosis journey; and policy and lived-experience research related to diagnostic pathways and health systems.
The website says the Foundation funds third-party nonprofit organizations around the world whose programs align with its priorities. Its 2025 grants included transportation to specialized care, support for children with rare and complex conditions, genetic testing and diagnosis, caregiver resources, health literacy, and mental health programming. Among its grantees, SeriousFun Children’s Network says its mission is to empower children with serious illnesses and their families through inclusive camp and recreational experiences. Courageous Parents Network says it supports families of children with life-limiting illnesses. Genetic Alliance says it engages individuals, families, and communities to transform health.
Grantmaking
In filing year 2025, the Foundation reported 12 grants totaling $1,090,670. Grant amounts ranged from $25,000 to $150,000, with a median of $95,000. Notable awards included $150,000 each to Angel Flight of New England for patient transportation and Roald Dahl’s Marvellous Children’s Charity for specialist support for children with rare and complex conditions; $140,000 to Connecticut Children’s Medical Center Foundation for support following out-of-range genetic newborn screening results; and $125,000 to Willow Foundation for experiences for young adults affected by rare diseases and cancers. Other grants included $100,000 to Caregiver Action Network and $100,000 to Make-A-Wish Canada.
Leadership & Key People
Leadership team and compensation from IRS filings
The 2025 filing lists Becky Jorgensen as president; Tamar Thompson as chairperson and board member; Simu Thomas as clerk and board member; Michael Elloian as treasurer and board member; and Ruth Diazaraque and Shane Doyle as board members.
The Alexion Charitable Foundation Inc is led by Becky Jorgensen, President on the 2025 filing; none of the 6 officers listed in 2025 report compensation.
Officers on the 2025 filing
Becky Jorgensen
President
New on the 2025 filing
2 hrs/week
No compensation reported
Tamar Thompson
Chairperson & Board Member
Director → Chairperson & Director, 2022
Chairperson & Director → Chairperson & Board Member, 2023
On filings since 2020
0.5 hrs/week
No compensation reported
Michael Elloian
Treasurer & Board Member
Director → Treasurer & Director, 2020
Treasurer & Director → Treasurer & Board Member, 2023
On filings since 2019
2 hrs/week
No compensation reported
Simu Thomas
Clerk & Board Member
Director → Board Member, 2023
Board Member → Clerk & Board Member, 2024
On filings since 2020
1 hr/week
No compensation reported
Shane Doyle
Board Member
Director → Board Member, 2023
On filings since 2021
0.5 hrs/week
No compensation reported
Ruth Diazaraque
Board Member
On filings since 2024
0.5 hrs/week
No compensation reported
Former officers (8)
- Former: Samantha Gilman (2024) — President
- Former: Sharon Barr (2020–2023) — Clerk & Board Member
- Former: Ashling Mulvaney (2022–2023) — President
- Former: Leanne Blanchette (2023) — President
- Former: Alexandra Schuman (2020–2022) — President
- Former: Jim Redmond (2020) — Director
- Former: Douglas Barry (2019) — Director
- Former: William Wheeler (2019) — Director
Data from IRS Form 990 filings, 2019–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Frequently asked questions about The Alexion Charitable Foundation Inc
How much does The Alexion Charitable Foundation Inc give each year?
The Alexion Charitable Foundation Inc gave $1.1M across 12 grants in 2025, according to its 2025 IRS Form 990-PF. In 2024 it gave $810K across 8 grants.
What is The Alexion Charitable Foundation Inc's typical grant size?
The Alexion Charitable Foundation Inc's median grant in 2025 was $95,000, and its average grant was $90,889, across 12 grants on its 2025 IRS Form 990-PF. Organizations receiving their first grant from The Alexion Charitable Foundation Inc that year got $82K on average.
Where does The Alexion Charitable Foundation Inc give grants?
The Alexion Charitable Foundation Inc's top state is Connecticut, with 20% of the grant dollars itemized on its 2025 IRS Form 990-PF. The next largest states were Massachusetts (19%) and District of Columbia (9%).
Does The Alexion Charitable Foundation Inc give general operating support?
Not in 2025: none of the 12 grants with a stated purpose on The Alexion Charitable Foundation Inc's 2025 IRS Form 990-PF were described as general or operating support.
Who are The Alexion Charitable Foundation Inc's largest grantees?
The Alexion Charitable Foundation Inc's largest 2025 grantees include Angel Flight of New England Inc ($150,000), Roald Dahl's Marvelous Children's Charity ($150,000) and Connecticut Children's Medical Center Foundation Inc ($140,000), according to its 2025 IRS Form 990-PF. Together they received 40% of its itemized 2025 grant dollars.
How large is The Alexion Charitable Foundation Inc?
The Alexion Charitable Foundation Inc reported $6.7M in total assets on its 2025 IRS Form 990-PF. It paid out $1.2M in qualifying distributions that year, against a required minimum of $355K (roughly 5% of its investment assets).
What does The Alexion Charitable Foundation Inc fund?
The Foundation’s stated mission is to address health disparities within and among the rare disease community, with a focus on equitable pathways to care, services, and resources for underserved communities. See mission & focus areas ↑
How do I apply for a grant from The Alexion Charitable Foundation Inc?
The 2025 filing says the Foundation makes contributions to both preselected organizations and unsolicited charitable organization requests, and that it does not restrict giving to preselected organizations. Eligibility and process details are in the grantmaking section of this profile. See how to apply ↑
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 2019–2025.
Data last updated October 2026. Sourced from IRS Form 990-PF filings. Research dossier generated October 2026.
Data update history
(3)
When this profile's IRS filing data changed on Grantable
- Added Form 990-PF for fiscal year 2019 (received by the IRS August 4, 2020)
- Added Form 990-PF for fiscal year 2025 (received by the IRS May 12, 2026)
- IRS filings on file for fiscal years 2020–2024
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Cite this profile
Grantable. (2026). The Alexion Charitable Foundation Inc funder profile. GrantGraph. Retrieved October 6, 2026, from https://grantable.co/funders/the-alexion-charitable-foundation-inc-morg_c51257d4197f4383b0c23bec3e242031
BibTeX
@misc{grantable_831065602_2026,
author = {{Grantable}},
title = {{The Alexion Charitable Foundation Inc funder profile}},
howpublished = {GrantGraph},
year = {2026},
url = {https://grantable.co/funders/the-alexion-charitable-foundation-inc-morg_c51257d4197f4383b0c23bec3e242031},
note = {Accessed 2026-10-06. Data licensed CC BY 4.0}
}The figures on this page are open data under CC BY 4.0: reuse them with credit to Grantable and a link. Download the data.
Figures come from The Alexion Charitable Foundation Inc's IRS filings (methodology). AI-written summaries, news items and logos are not covered by the open licence. Spot an error? Email hello@grantable.co.
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