Nonprofit · EIN 38-2813140
THE EHLERS-DANLOS SOCIETY
Tax-exempt · NEW YORK, NY 10013
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $9,604,145 | $9,439,617 | $164,528 | $9,617,006 | $1,773,500 | $7,843,506 |
| December 31, 2024 | 990 | $4,956,939 | $4,515,627 | $441,312 | $8,202,898 | $529,120 | $7,673,778 |
| December 31, 2023 | 990 | $9,764,053 | $5,185,571 | $4,578,482 | $8,734,113 | $1,513,855 | $7,220,258 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $8,845,686
- Program service revenue
- $737,412
- Investment income
- $541
- Net income from sales of inventory
- $5,486
- Other revenue
- $20,506
Expenses
- Grants and similar amounts paid
- $6,974,640
- Compensation of officers, directors and key employees
- $99,132
- Other salaries and wages
- $522,426
- Salaries, compensation and benefits (total)
- $718,533
- Professional fundraising fees
- $0
- Legal fees
- $11,309
- Accounting fees
- $41,523
- Travel
- $297,693
- Depreciation
- $45,055
- Program services (functional)
- $8,716,932
- Management and general (functional)
- $463,940
- Fundraising (functional)
- $258,745
Balance sheet and other
- Total assets, start of year
- $8,202,898
- Total assets, end of year
- $9,617,006
- Total liabilities, end of year
- $1,773,500
- Net assets, end of year
- $7,843,506
- Land, buildings and equipment
- $7,591
- Publicly traded securities
- $32,324
- Net assets without donor restrictions
- $680,933
- Net assets with donor restrictions
- $7,162,573
- Gross unrelated business income
- $5,486
- Gross receipts
- $9,617,569
- Employees
- 15
- Volunteers
- 10
- Year formed
- 1988
- State of legal domicile
- MI
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | From related orgs | Other / benefits |
|---|---|---|---|---|---|
| LARA BLOOM | CEO Officer | 50 | $0 | $219,187 | $0 |
| ERIC ALLEY | CFO Officer | 45 | $93,697 | $0 | $5,435 |
| MELANIE MACLEOD | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| WOODROW GANDY | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| SUSAN HASKEL | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| AMY ROCHLIN | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| PAUL SEGAL | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| CLAIR FRANCOMANO | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| FRANCES FITZGERALD | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| ANOUSHE HUSAIN | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| AISLING GREEN | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| AKILAH CADET | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| WARD FITZGERALD | DIRECTOR Trustee or director | 1 | $0 | $0 | $0 |
| ROBERT RUBIN | TREASURER Trustee or director, Officer | 5 | $0 | $0 | $0 |
| JOHN ZONARICH | SECRETARY Trustee or director, Officer | 5 | $0 | $0 | $0 |
1 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| SUSAN HAWKINS | PRESIDENT Trustee or director, Officer | 5 | $0 |
990 for the year ended December 31, 2024: 16 people
| Name | Title | Hours / week | Compensation | From related orgs |
|---|---|---|---|---|
| LARA BLOOM | CEO Officer | 50 | $0 | $215,131 |
| ERIC ALLEY | CFO Officer | 40 | $86,347 | $0 |
| MELANIE MACLEOD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| WOODROW GANDY | DIRECTOR Trustee or director | 1 | $0 | $0 |
| SUSAN HASKEL | DIRECTOR Trustee or director | 1 | $0 | $0 |
| AMY ROCHLIN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MICHELLE JALALI | DIRECTOR Trustee or director | 1 | $0 | $0 |
| CLAIR FRANCOMANO | DIRECTOR Trustee or director | 1 | $0 | $0 |
| FRANCES FITZGERALD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| ANOUSHE HUSAIN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| AISLING GREEN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| AKILAH CADET | DIRECTOR Trustee or director | 1 | $0 | $0 |
| WARD FITZGERALD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| ROBERT RUBIN | TREASURER Trustee or director, Officer | 5 | $0 | $0 |
| JOHN ZONARICH | SECRETARY Trustee or director, Officer | 5 | $0 | $0 |
| SUSAN HAWKINS | PRESIDENT Trustee or director, Officer | 5 | $0 | $0 |
990 for the year ended December 31, 2023: 18 people
| Name | Title | Hours / week | Compensation | From related orgs |
|---|---|---|---|---|
| LARA BLOOM | CEO Trustee or director, Officer | 50 | $0 | $165,563 |
| ERIC ALLEY | FINANCE DIRECTOR Officer | 40 | $77,759 | $0 |
| ELIZABETH HERNDON | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MELANIE MACLEOD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| EDWARD FITZGERALD III | EMERITUS BOARD MEMBER Trustee or director | 1 | $0 | $0 |
| WOODROW GANDY | DIRECTOR Trustee or director | 1 | $0 | $0 |
| SUSAN HASKEL | DIRECTOR Trustee or director | 1 | $0 | $0 |
| AMY ROCHLIN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MITUL MODI | DIRECTOR Trustee or director | 1 | $0 | $0 |
| MICHELLE JALALI | DIRECTOR Trustee or director | 1 | $0 | $0 |
| CLAIR FRANCOMANO | DIRECTOR Trustee or director | 1 | $0 | $0 |
| FRANCES FITZGERALD | DIRECTOR Trustee or director | 1 | $0 | $0 |
| ANOUSHE HUSAIN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| AISLING GREEN | DIRECTOR Trustee or director | 1 | $0 | $0 |
| AKILAH CADET | DIRECTOR Trustee or director | 1 | $0 | $0 |
| ROBERT RUBIN | TREASURER Trustee or director, Officer | 5 | $0 | $0 |
| JOHN ZONARICH | SECRETARY Trustee or director, Officer | 5 | $0 | $0 |
| SUSAN HAWKINS | PRESIDENT Trustee or director, Officer | 5 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 447 BROADWAY 2ND FLOOR 670, NEW YORK, NY 10013-2562
- Principal officer (990 for 2025)
- LARA BLOOM, 447 BROADWAY 2ND FLOOR 670, NEW YORK, NY 10013
- Signed the 990
- LARA BLOOM, PRESIDENT AND CEO
- Phone
- (410) 670-7577
- Website
- WWW.EHLERS-DANLOS.COM
- Return prepared by
- KRUGGEL LAWTON & COMPANY LLC
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.
Program accomplishments
- 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
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 38-2813140
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Public charity, 50% deduction limit
- Exempt since
- 1988
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Category (NTEE)
- Health care (E99Z)
- Assets (IRS master file)
- $9,617,006
- Income (IRS master file)
- $9,617,569
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $9,604,145 | $9,439,617 | $9,617,006 | XML |
| 990-T | December 2025 | – | – | – | IRS |
| 990 | December 2024 | $4,956,939 | $4,515,627 | $8,202,898 | XML |
| 990-T | December 2024 | – | – | – | IRS |
| 990 | December 2023 | $9,764,053 | $5,185,571 | $8,734,113 | XML |
| 990-T | December 2023 | – | – | – | IRS |
| 990 | December 2022 | $4,514,528 | $4,085,098 | $3,182,723 | IRS |
| 990-T | December 2022 | – | – | – | IRS |
| 990 | December 2021 | – | – | – | IRS |
| 990-T | December 2021 | – | – | – | IRS |
| 990 | December 2020 | – | – | – | IRS |
| 990-T | December 2020 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
| 990 | December 2017 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 38-2813140).
Questions about THE EHLERS-DANLOS SOCIETY
- What is the EIN of THE EHLERS-DANLOS SOCIETY?
- The employer identification number (EIN) of THE EHLERS-DANLOS SOCIETY is 38-2813140.
- Is THE EHLERS-DANLOS SOCIETY tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1988.
- Are donations to THE EHLERS-DANLOS SOCIETY tax-deductible?
- Yes. It is listed in IRS Publication 78 (Public charity, 50% deduction limit).
- Which annual return does THE EHLERS-DANLOS SOCIETY file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of THE EHLERS-DANLOS SOCIETY due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did THE EHLERS-DANLOS SOCIETY last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of THE EHLERS-DANLOS SOCIETY?
- The 990 for the year ended December 31, 2025 names LARA BLOOM.
- Who are the officers and directors of THE EHLERS-DANLOS SOCIETY?
- The 990 for the year ended December 31, 2025 lists 16 people; 1 received compensation from the organization.
- How much revenue does THE EHLERS-DANLOS SOCIETY have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $9,604,145, expenses of $9,439,617 and total assets of $9,617,006 at year end.
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