THE EHLERS-DANLOS SOCIETY IS A GLOBAL ORGANIZATION DEDICATED TO ADVANCING AND ACCELERATING RESEARCH AND EDUCATION IN EHLERS-DANLOS SYNDROMES (EDS) AND HYPERMOBILITY SPECTRUM DISORDERS (HSD). WE SUPPORT THE DEVELOPMENT OF EFFECTIVE AND EQUITABLE EDS AND HSD THERAPIES AND WORK COLLABORATIVELY TO IMPROVE THE LIVES OF INDIVIDUALS AFFECTED BY EDS AND HSD.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$8.2M
-6.1% YoY
Annual Giving
$541K
Grant Count
3
Avg Grant Size
$180K
About Ehlers-danlos Society
Based on IRS filings
Ehlers-danlos Society is a nonprofit organization focused on Health, based in NEW YORK, NY. IRS filing data is available from 2020 through 2024. As of 2024, the organization holds $8.2M in total assets. In 2024, it awarded 3 grants totaling $541K. Net investment income was $566.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Cities
Financial History
Multi-year comparison from IRS filings
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $8,202,898 | $8,734,113 | $3,182,723 |
| Revenue | $4,956,939 | $9,764,053 | $4,514,528 |
| Expenses | $4,515,627 | $5,185,571 | $4,085,098 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $566 | $543 | — |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 3 recipients in 2024
Grant Size Distribution
16 grants across all recorded years
Giving History
Grant recipients and amounts by year
Among its reported 2024 grants, the largest include Stanford University ($332,067), Children's Hospital Corporation ($133,573), Carle Foundation Hospital ($75,854).
| Recipient | Purpose | Amount |
|---|---|---|
| CARLE FOUNDATION HOSPITAL URBANA, IL | RESEARCH GRANT | $75,854 |
| STANFORD UNIVERSITY STANFORD, CA | RESEARCH GRANT | $332,067 |
| CHILDREN'S HOSPITAL CORPORATION BOSTON, MA | RESEARCH GRANT | $133,573 |
Leadership & Key People
Officers and directors from IRS filings
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| MELANIE MACLEOD | DIRECTOR | 1 | — |
| WOODROW GANDY | DIRECTOR | 1 | — |
| SUSAN HASKEL | DIRECTOR | 1 | — |
| AMY ROCHLIN | DIRECTOR | 1 | — |
| MICHELLE JALALI | DIRECTOR | 1 | — |
| CLAIR FRANCOMANO | DIRECTOR | 1 | — |
| FRANCES FITZGERALD | DIRECTOR | 1 | — |
| ANOUSHE HUSAIN | DIRECTOR | 1 | — |
| AISLING GREEN | DIRECTOR | 1 | — |
| AKILAH CADET | DIRECTOR | 1 | — |
| WARD FITZGERALD | DIRECTOR | 1 | — |
| ROBERT RUBIN | TREASURER | 5 | — |
| JOHN ZONARICH | SECRETARY | 5 | — |
| SUSAN HAWKINS | PRESIDENT | 5 | — |
| LARA BLOOM | CEO | 50 | — |
| ERIC ALLEY | CFO | 40 | $86,347 |
Subject Areas
Focus areas based on grantmaking activity
Frequently Asked Questions
What is Ehlers-danlos Society?
Ehlers-danlos Society is a nonprofit organization focused on Health, based in NEW YORK, NY. It holds $8.2M in total assets as of 2024.
How large is Ehlers-danlos Society?
As of 2024, Ehlers-danlos Society holds $8.2M in total assets with $5.0M in annual revenue. It awarded 3 grants totaling $541K in 2024.
Where does Ehlers-danlos Society operate?
Ehlers-danlos Society has awarded grants in California, Illinois, Massachusetts, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina.
What size grants does Ehlers-danlos Society award?
In 2024, Ehlers-danlos Society awarded 3 grants totaling $541K — an average of about $180K per grant, based on its IRS Form 990 filings.
What is Ehlers-danlos Society's EIN?
Ehlers-danlos Society's EIN (Employer Identification Number) is 38-2813140. IRS Form 990 filing data is available on this page for 2020–2024.
Explore Open Grants
Browse active grant opportunities in Ehlers-danlos Society's focus areas in our free grants database
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Data last updated April 2026. Sourced from IRS Form 990-PF filings.
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