Public Charity

EHLERS-DANLOS SOCIETY

EHLERS-DANLOS SOCIETY is a Public Charity headquartered in NEW YORK, NY. Financial data from the 2025 filing: $9.6M revenue, $9.4M expenses, $9.6M total assets. 43 publicly reported grants to this organization, totaling roughly $5.5M, appear in IRS filings.

EIN: 382813140 NEW YORK, NY Health Care N.E.C. NTEE: E99 Latest filing: 2025
Total Revenue$9.6M
Total Expenses$9.4M
Total Assets$9.6M
Grant Records43
Funding Total$5.5M
Filing Years2021–2025

Mission

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.

Where $100 goes at Ehlers-Danlos Society

How Ehlers-Danlos Society divides every $100 it spends, from its own Form 990 filings, averaged across 8 years.

$83 Programs the work itself
$12 Management running the organization
$5 Fundraising raising the next dollar

Inside the $83 for programs

$70
Bringing together medical professionals from all over the world to work on ground-breaking management and care
84% of program spending
$13
The Ehlers-Danlos Society organizes medical and scientific symposiums to examine the latest research and update the diagnostic criteria and guidelines for management and care
16% of program spending
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Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.

Officers & Directors

DIRECTOR Aisling Green
DIRECTOR Akilah Cadet
DIRECTOR Amy Rochlin
DIRECTOR Anoushe Husain
DIRECTOR Clair Francomano
CFO Eric Alley

Officer compensation and complete director data available with membership.

Top Grant Purposes

General Support
$5,082,967 34 grants
Research & Policy
$297,267 1 grant
Health & Medicine
$51,850 5 grants
Unspecified
$28,759 2 grants

Financial Trends

Year Revenue Expenses Assets
2025 $9.6M $9.4M $9.6M
2024 $5.0M $4.5M $8.2M
2023 $9.8M $5.2M $8.7M
2022 $4.5M $4.1M $3.2M
2021 $4.2M $3.4M $2.8M

Between 2021 and 2025, reported annual revenue grew from $4.2M to $9.6M (+127%), with total assets most recently reported at $9.6M.

Interactive year-over-year charts and full filing details available with membership.

See the full picture for EHLERS-DANLOS SOCIETY

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