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.
Key facts about Ehlers-Danlos Society
In short: Ehlers-Danlos Society gave $2.8M across 7 grants in 2025 (avg $399K), top state Colorado. Source: 2025 IRS Form 990.
- EIN
- 38-2813140
- Latest 990 filing
- Form 990, 2025
- Annual giving (2025)
- $2,796,144
- Grants made (2025)
- 7
- Average grant
- $399,449
- Median grant
- $316,727
- Total assets
- $9,617,006
- Primary geography
- Colorado (30% of itemized 2025 grant dollars)
Data from IRS Form 990, 2025; updated September 2026.
Financial Overview
From 2025 IRS Form 990 · View filing
Total Assets
$9.6M
+17.2% YoY
Annual Giving
$2.8M
+416.4% YoY
Grant Count
7
+133.3% YoY
Avg Grant Size
$399K
+121.3% YoY
How Ehlers-Danlos Society gives
- Giving grew 107% from 2022 to 2025. Method
From the foundation's IRS Form 990 filings. Methodology.
About Ehlers-Danlos Society
Based on IRS filings
Ehlers-Danlos Society is a public charity focused on Health, based in New York, NY. IRS filing data is available from 2020 through 2025. As of 2025, the organization holds $9.6M in total assets. In 2025, it awarded 7 grants totaling $2.8M. Net investment income was $541.
Focus Areas
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Geographic Focus
Where this funder awards grants
Grant Distribution by State
Share of 2025 grant dollars across all 7 itemized grants.
States
Cities
Giving Over Time
Total grant dollars and number of grants per year
From 2020 to 2025, annual grant giving ranged from $19K (2020) to $2.8M (2025). In 2025 it made 7 grants totaling $2.8M.
Grant Insights
How this funder distributes its grants
Top Recipients
Top 7 recipients in 2025
The largest 2025 recipient was University of Colorado ($848K). Together the top 7 received $2.8M.
Grant Size Distribution
24 grants across all recorded years
The most common grant size was in the $100–250K range: 9 grants of 24 (38%).
Giving History
Grant recipients and amounts by year
| Recipient | Purpose | Amount |
|---|---|---|
| University of Colorado Denver, CO | Research Grant | $847,953 |
| Stanford University Redwood City, CA | Research Grants | $603,897 |
| Children's Hospital Corporation Boston, MA | Research Grant | $382,692 |
| Carle Foundation Hospital Urbana, IL | Research Grant | $316,727 |
| Rhode Island Hospital Providence, RI | Research Grant | $296,286 |
| Indiana University Health Foundation Indianapolis, IN | Research Grant | $288,476 |
| The Pennsylvania State University University Park, PA | Research Grant | $60,113 |
Financial History
Multi-year comparison from IRS filings
| Metric | 2025 | 2024 | 2023 |
|---|---|---|---|
| Total Assets | $9,617,006 | $8,202,898 | $8,734,113 |
| Revenue | $9,604,145 | $4,956,939 | $9,764,053 |
| Expenses | $9,439,617 | $4,515,627 | $5,185,571 |
| Net Investment Income | $541 | $566 | $543 |
Data update history
When this profile's IRS filing data changed on Grantable
- Updated Form 990 for fiscal year 2020 (received by the IRS November 15, 2021)
- Updated Form 990 for fiscal year 2021 (received by the IRS August 30, 2022)
- Updated Form 990 for fiscal year 2022 (received by the IRS June 5, 2023)
- Updated Form 990 for fiscal year 2024 (received by the IRS June 11, 2025)
- Updated Form 990 for fiscal year 2023 (received by the IRS May 15, 2024)
- Added Form 990 for fiscal year 2025 (received by the IRS June 23, 2026)
- IRS filings on file for fiscal years 2020–2024
Leadership & Key People
Officers and directors from IRS filings
Ehlers-Danlos Society is led by Lara Bloom, CEO since 2022 (on filings since 2020); 1 of 16 officers listed in 2025 is compensated.
Officers on the 2025 filing
Lara Bloom
CEO
President → CEO, 2022
On filings since 2020
50 hrs/week
$19K (2020) → $0 (2025)
Susan Hawkins
President
Chair → President, 2022
On filings since 2020
5 hrs/week
No compensation reported
Melanie Macleod
Director
On filings since 2020
1 hr/week
No compensation reported
Susan Haskel
Director
On filings since 2020
1 hr/week
No compensation reported
Woodrow Gandy
Director
On filings since 2020
1 hr/week
No compensation reported
Amy Rochlin
Director
On filings since 2022
1 hr/week
No compensation reported
Clair Francomano
Director
On filings since 2022
1 hr/week
No compensation reported
Aisling Green
Director
On filings since 2023
1 hr/week
No compensation reported
Akilah Cadet
Director
On filings since 2023
1 hr/week
No compensation reported
Anoushe Husain
Director
On filings since 2023
1 hr/week
No compensation reported
Frances Fitzgerald
Director
On filings since 2023
1 hr/week
No compensation reported
Ward Fitzgerald
Director
On filings since 2024
1 hr/week
No compensation reported
Paul Segal
Director
New on the 2025 filing
1 hr/week
No compensation reported
Eric Alley
CFO
Finance Director → CFO, 2024
On filings since 2020
45 hrs/week
$2K (2020) → $94K (2025)
John Zonarich
Secretary
On filings since 2020
5 hrs/week
No compensation reported
Robert Rubin
Treasurer
On filings since 2022
5 hrs/week
No compensation reported
Former officers (9)
- Former: Michelle Jalali (2022–2024) — Director
- Former: Edward Fitzgerald III (2020–2023) — Emeritus Board Member
- Former: Elizabeth Herndon (2020–2023) — Director
- Former: Mitul Modi (2022–2023) — Director
- Former: Jennifer Tjernagel (2020–2021) — Director
- Former: Linda Neumann-Potash (2020–2021) — Director
- Former: Philip Hotchkiss (2020–2021) — Director
- Former: Rob Rubin (2020–2021) — Treasurer
- Former: Sandra Chack (2020–2021) — Director
Data from IRS Form 990 filings, 2020–2025. "On filings since" is the earliest filing we hold that lists the person; hours are average hours per week as reported.
Compensation Overview
From 2025 IRS filing
The highest reported compensation on the 2025 filing was $94K, to Eric Alley (CFO).
Frequently asked questions about Ehlers-Danlos Society
How much does Ehlers-Danlos Society give each year?
Ehlers-Danlos Society gave $2.8M across 7 grants in 2025, according to its 2025 IRS Form 990. In 2024 it gave $541K across 3 grants.
What is Ehlers-Danlos Society's typical grant size?
Ehlers-Danlos Society's median grant in 2025 was $316,727, and its average grant was $399,449, across 7 grants on its 2025 IRS Form 990.
Where does Ehlers-Danlos Society give grants?
Ehlers-Danlos Society's top state is Colorado, with 30% of the grant dollars itemized on its 2025 IRS Form 990. The next largest states were California (22%) and Massachusetts (14%).
Does Ehlers-Danlos Society give general operating support?
Not in 2025: none of the 7 grants with a stated purpose on Ehlers-Danlos Society's 2025 IRS Form 990 were described as general or operating support. Recurring purposes include "Research Grant" (6 grants).
Who are Ehlers-Danlos Society's largest grantees?
Ehlers-Danlos Society's largest 2025 grantees include University of Colorado ($847,953), Stanford University ($603,897) and Children's Hospital Corporation ($382,692), according to its 2025 IRS Form 990. Together they received 66% of its itemized 2025 grant dollars.
How large is Ehlers-Danlos Society?
Ehlers-Danlos Society reported $9.6M in total assets on its 2025 IRS Form 990. Its revenue that year was $9.6M.
What is Ehlers-Danlos Society?
Ehlers-Danlos Society is a public charity focused on Health, based in New York, NY. It holds $9.6M in total assets as of 2025.
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 2020–2025.
Data last updated September 2026. Sourced from IRS Form 990 filings.
Here's the math on researching Ehlers-Danlos Society by hand.
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