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Nonprofiteer
← THE EHLERS-DANLOS SOCIETY

Form 990 for tax year 2024

Filed by THE EHLERS-DANLOS SOCIETY.

Totals

Total revenue
$4,956,939
Total expenses
$4,515,627
Contributions and grants received
$4,394,416
Grants paid
$1,182,364
Program service revenue
$538,854
Investment income
$566
Other revenue
$23,103
Total assets, end of year
$8,202,898
Total liabilities, end of year
$529,120
Net assets or fund balances, end of year
$7,673,778
Program services expenses (Part IX)
$3,134,759
Management and general expenses
$1,125,780
Fundraising expenses
$255,088
Program service expenses (Part III)
$3,134,759

Program services were 69.4% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1f · All other contributions, gifts and grants

    $4,394,416

  • 2a · Program service revenue: CONFERENCE

    total $538,854 · related or exempt $538,854

  • 3 · Investment income

    total $566 · excluded $566

  • 10a · Gross sales of inventory

    $27,342

  • 10b · Cost of goods sold

    $19,649

  • 10c · Net income from sales of inventory

    total $7,693 · unrelated business $7,693

  • 11a · Other revenue: MISCELLANEOUS REVENUE

    total $15,410 · related or exempt $15,410

  • 11e · Other revenue, total

    $15,410

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $546,256 · program services $546,256

  • 2 · Grants to domestic individuals

    total $20,000 · program services $20,000

  • 3 · Grants to foreign organizations and individuals

    total $616,108 · program services $616,108

  • 5 · Compensation of officers, directors and key employees

    total $301,478 · program services $163,544 · management and general $86,273 · fundraising $51,661

  • 7 · Other salaries and wages

    total $1,272,484 · program services $575,543 · management and general $599,731 · fundraising $97,210

  • 8 · Pension plan contributions

    total $5,634 · program services $3,662 · management and general $845 · fundraising $1,127

  • 9 · Other employee benefits

    total $30,718 · program services $19,966 · management and general $4,608 · fundraising $6,144

  • 10 · Payroll taxes

    total $51,089 · program services $33,208 · management and general $7,663 · fundraising $10,218

  • 11a · Fees: management

    total $231,259 · program services $128,737 · management and general $96,612 · fundraising $5,910

  • 11b · Fees: legal

    total $18,221 · fundraising $18,221

  • 11c · Fees: accounting

    total $44,650 · management and general $44,650

  • 11g · Fees: other

    total $234,805 · program services $199,112 · management and general $25,457 · fundraising $10,236

  • 12 · Advertising and promotion

    total $35,465 · program services $28,028 · management and general $878 · fundraising $6,559

  • 13 · Office expenses

    total $64,799 · program services $32,439 · management and general $11,590 · fundraising $20,770

  • 14 · Information technology

    total $45,350 · program services $7,293 · management and general $38,057

  • 16 · Occupancy

    total $935 · management and general $935

  • 17 · Travel

    total $286,210 · program services $172,148 · management and general $112,835 · fundraising $1,227

  • 19 · Conferences, conventions and meetings

    total $568,905 · program services $566,824 · management and general $2,081

  • 22 · Depreciation, depletion and amortization

    total $22,916 · management and general $22,916

  • 23 · Insurance

    total $29,207 · management and general $29,207

  • 24a · Other expenses: DUES AND SUBSCRIPTIONS

    total $74,933 · program services $17,921 · management and general $31,463 · fundraising $25,549

  • 24b · Other expenses: MISCELLANEOUS EXPENSES

    total $14,205 · program services $3,970 · management and general $9,979 · fundraising $256

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $2,549,225 · end of year $4,021,550

  • 2 · Savings and temporary cash investments

    beginning of year $596,048 · end of year $496,326

  • 3 · Pledges and grants receivable

    beginning of year $4,113,723 · end of year $2,645,775

  • 4 · Accounts receivable

    beginning of year $1,233,052 · end of year $543,334

  • 9 · Prepaid expenses and deferred charges

    beginning of year $141,958 · end of year $380,689

  • 10a · Land, buildings and equipment: cost or other basis

    $19,978

  • 10b · Land, buildings and equipment: accumulated depreciation

    $7,828

  • 10c · Land, buildings and equipment, net

    beginning of year $6,330 · end of year $12,150

  • 11 · Investments: publicly traded securities

    beginning of year $7,566 · end of year $14,421

  • 14 · Intangible assets

    beginning of year $86,211 · end of year $88,653

  • 17 · Accounts payable and accrued expenses

    beginning of year $1,365,051 · end of year $26,890

  • 18 · Grants payable

    beginning of year $95,238 · end of year $362,067

  • 19 · Deferred revenue

    beginning of year $53,566 · end of year $140,163

  • 27 · Net assets without donor restrictions

    beginning of year $462,641 · end of year $925,414

  • 28 · Net assets with donor restrictions

    beginning of year $6,757,617 · end of year $6,748,364

Mission and programs · 2024

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 $2,131,636 · Grants $1,162,364 · Revenue $421,241

  • 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 $1,003,123 · Grants $20,000 · Revenue $133,023

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • 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

  • Michelle Jalali

    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
    $215,131
    From this org
    $0
    From related orgs
    $215,131
    Other
    $0
    Hours/week
    50

    Schedule J breakdown matched by us

    Base
    $0 + $203,504 related
    Bonus
    $0 + $8,967 related
    Other
    $0 + $2,660 related
    Deferred
    $0
    Nontaxable benefits
    $0
    Filer's total
    $0 + $215,131 related

  • Eric Alley

    CFO

    Total calculated
    $86,347
    From this org
    $86,347
    From related orgs
    $0
    Other
    $0
    Hours/week
    40

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.

Schedule J

Answered yes

  • 3 · Approval by the board or compensation committee

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 3
LARA BLOOM'S COMPENSATION IS ESTABLISHED BY APPROVAL FROM THE BOARD OF DIRECTORS.

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

Related organizations on this return

Schedule R Part II: tax-exempt organizations related to the filer by control. It does not record shared board members or money.

  • THE EHLERS-DANLOS SOCIETY UK

    PROVIDING INTERNATIONAL SUPPORT · UK

Provenance

Return type
form_990
Tax year
2024
Filed
9 June 2025
IRS schema version
2024v5.1
Source object
202531629349300508

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