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Compensation 990 is an independent service that uses public IRS Form 990 filings as its source data. We clean and standardize this information, but the original filings may contain errors or omissions. Years on this site refer to the organization’s fiscal year end date on the filing.

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Organizations Health Care Ehlers-Danlos Society

Ehlers-Danlos Society

Fiscal year ending 2020. Filed on November 15, 2021.

1732 1st Ave 20373
New York, New York 10128

Ehlers-Danlos Society (EIN: 38-2813140) has filed an IRS Form 990 between fiscal years 2016 and 2024. In its fiscal year 2020 IRS Form 990 filing, Ehlers-Danlos Society, a 501(c)(3) charitable organization, reported compensation for 3 out of 12 total employees. Among the employees shown here, the average compensation is $55,367. The highest compensated employee at Ehlers-Danlos Society is Lara Bloom with fiscal year 2020 compensation of $102,653. Ehlers-Danlos Society changed its name from Ehlers-Danlos National Foundation in 2020.

Revenue, expenses, and employee compensation

Revenue

$2,230,715

Expenses

$1,684,441

Employee compensation

$702,182
Revenue, expenses, and employee compensation over time

Reported Compensated Employees

Lara Bloom
President
$102,653
$18,653 $84,000 No other comp
Rob Rubin
Chief Financial Officer
$61,948
$61,948 No related compNo other comp
Eric Alley
Finance Director
$1,500
$1,500 No related compNo other comp

Benchmark Employee Compensation

Non-Employee Board Members

Edward Fitzgerald III
Director
Elizabeth Herndon
Director
Jennifer Tjernagel
Director
John Zonarich
Secretary
Linda Neumann-Potash
Director
Melanie MacLeod
Director
Philip Hotchkiss
Director
Rob Rubin
Treasurer
Sandra Chack
Director
Susan Haskel
Director
Susan Hawkins
Chair
Woodrow Gandy
Director

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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