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Organizations Health Care Ehlers-Danlos Society

Ehlers-Danlos Society

Fiscal year ending 2024. Filed on June 11, 2025.

447 Broadway 2nd Floor 670
New York, New York 10013

Ehlers-Danlos Society (EIN: 38-2813140) has filed an IRS Form 990 between fiscal years 2016 and 2024. In its fiscal year 2024 IRS Form 990 filing, Ehlers-Danlos Society, a 501(c)(3) charitable organization, reported compensation for 2 out of 6 total employees. Among the employees shown here, the average compensation is $150,739. The highest compensated employee at Ehlers-Danlos Society is Lara Bloom with fiscal year 2024 compensation of $215,131. Ehlers-Danlos Society changed its name from Ehlers-Danlos National Foundation in 2020.

Revenue, expenses, and employee compensation

Revenue

$4,956,939

Expenses

$4,515,627

Employee compensation

$1,661,403
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Lara Bloom
Chief Executive Officer
$215,131
$0 $215,131 No other comp
Eric Alley
Chief Financial Officer
$86,347
$86,347 No related compNo other comp

Benchmark Employee Compensation

Non-Employee Board Members

Aisling Green
Director
Akilah Cadet
Director
Amy Rochlin
Director
Anoushe Husain
Director
Clair Francomano
Director
Frances Fitzgerald
Director
John Zonarich
Secretary
Melanie MacLeod
Director
Michelle Jalali
Director
Robert Rubin
Treasurer
Susan Haskel
Director
Susan Hawkins
President

Contractors

Metabolon
Analysis of Blood Samples to Research Eh
$572,950
Somalogic
Analysis of Blood Samples to Research Eh
$478,286

Mission Statement

THE EHLERS-DANLOS SOCIETY IS A GLOBAL ORGNIZATION DEDICATED TO ADVANCING AND ACCELERATING RESEARCH AND EDUCATION IN EHLERS-DANLOS SYNDROMES (EDS) AND HYPERMOBILITIY SPECTRUM DISPORDERS (HSD). WE SUPPORT THE DEVELOPMENT OF EFFECTIVE AND EQUITABLE EDS AND HSD THERAPIES AND WORK COLLAVORATIVELY TO IMPOVE THE LIVES OF INDIVIDUALS AFFECTED BY EDS AND HSD.

Revisions to this organization profile

June 11, 2025:
2024 Ehlers-Danlos Society 990 filed
May 15, 2024:
2023 Ehlers-Danlos Society 990 filed
June 5, 2023:
2022 Ehlers-Danlos Society 990 filed

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