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THE EHLERS-DANLOS SOCIETY

EIN 38-2813140 NEW YORK, NY

Revenue 2025
$9,604,145
Expenses 2025
$9,439,617

Program services were 92.3% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection
03
NTEE code
E99Z
Classification
1000
Street
447 BROADWAY 2ND FLOOR 670

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 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.

Activities or mission (Part I)

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.

  • BRINGING TOGETHER MEDICAL PROFESSIONALS FROM ALL OVER THE WORLD TO WORK ON GROUND-BREAKING MANAGEMENT AND CARE. AT THE CORE OF THIS RESEARCH IS THE GLOBAL EDS AND HSD REGISTRY. THE REGISTRY WILL ALSO PROVIDE NEW OPPORTUNITIES FOR RESEARCH, INCLUDING IDENTIFYING LINKS BETWEEN EDS AND HSD AND OTHER CONDITIONS. THE EHLERS-DANLOS SOCIETY HAS AWARDED FUNDING FOR RESEARCH GRANTS INTO THE EHLERS-DANLOS SYNDROMES AND HYPERMOBILITY SPECTRUM DISORDERS. OUR GOAL IS TO ENSURE CONSISTENT AND GROUNDBREAKING RESEARCH INTO THESE CONDITIONS TO HELP INDIVIDUALS LIVING WITH THESE CONDITIONS, WORLDWIDE.

    Expenses $7,322,223 · Grants $6,974,640 · Revenue $624,519

  • 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. WE WORK WITH THE COMORBIDITY COALITION AND THE INTERNATIONAL CONSORTIUM ON DEVELOPED CLINICAL CARE PATHWAYS FOR MANAGEMENT AND DIAGNOSIS. EVENTS FOR HEALTH PROFESSIONALS ARE HELD GLOBALLY AND ARE CME-ACCREDITED. ANNUAL GLOBAL LEARNING CONFERENCES BRING TOGETHER AND UNITE OUR COMMUNITY, PROVIDING OPPORTUNITIES TO INTERACT, FIND SUPPORT, AND LEARN MANAGEMENT STRATEGIES AND INFORMATION FROM WORLD-LEADING EXPERTS IN EDS AND HSD.

    Expenses $1,394,709 · Revenue $127,913

As filed on the 2025 return. The filer continues this part on Schedule O, which is not shown here.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

  • Melanie MacLeod

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Woodrow Gandy

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Susan Haskel

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Amy Rochlin

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Paul Segal

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Clair Francomano

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Frances Fitzgerald

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Anoushe Husain

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Aisling Green

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Akilah Cadet

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Ward Fitzgerald

    DIRECTOR

    Total calculated
    $0
    Hours/week
    1

  • Robert Rubin

    TREASURER

    Total calculated
    $0
    Hours/week
    5

  • John Zonarich

    SECRETARY

    Total calculated
    $0
    Hours/week
    5

  • Susan Hawkins

    PRESIDENT

    Total calculated
    $0
    Hours/week
    5

  • Lara Bloom

    CEO

    Total calculated
    $219,187
    From this org
    $0
    From related orgs
    $219,187
    Other
    $0
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $0 + $219,187 related
    Bonus
    $0
    Other
    $0
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $0 + $219,187 related

  • Eric Alley

    CFO

    Total calculated
    $99,132
    From this org
    $93,697
    From related orgs
    $0
    Other
    $5,435
    Hours/week
    45

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us. Earlier years are each on their own filing page.

Filings

  • 2025
    Revenue
    $9,604,145
    Expenses
    $9,439,617
    Contributions
    $8,845,686
    Grants paid
    $6,974,640
  • 2024
    Revenue
    $4,956,939
    Expenses
    $4,515,627
    Contributions
    $4,394,416
    Grants paid
    $1,182,364
  • 2023
    Revenue
    $9,764,053
    Expenses
    $5,185,571
    Contributions
    $9,359,005
    Grants paid
    $217,511
  • 2022
    Revenue
    $4,514,528
    Expenses
    $4,085,098
    Contributions
    $3,933,892
    Grants paid
    $1,897,426

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

  • 2025 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2024 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2023 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2022 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2021 · 990

    Revenue
    $4,237,967
    Expenses
    $3,433,295
    Assets (EOY)
    $2,819,867

  • 2021 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2020 · 990

    Revenue
    $2,230,715
    Expenses
    $1,684,441
    Assets (EOY)
    $2,191,805

  • 2020 · 990-T

    Revenue
    not reported
    Expenses
    not reported
    Assets (EOY)
    not reported

  • 2018 · 990

    Revenue
    $1,606,827
    Expenses
    $1,707,982
    Assets (EOY)
    $645,814

  • 2017 · 990

    Revenue
    $952,561
    Expenses
    $609,119
    Assets (EOY)
    $491,682

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

The 10 largest by cash amount. The API serves every itemized grant.

Related organizations

From Schedule R Part II, where a filer lists the tax-exempt organizations it is related to by control. It does not record shared board members or money.

Declared on its 2025 return

  • THE EHLERS-DANLOS SOCIETY UK

    PROVIDING INTERNATIONAL SUPPORT · UK

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 13 October 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 13 October 2026 and read 29 October 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.