The Ehlers-Danlos Society
- Assets
- $2.8m
- Revenue
- $4.2m
- Investments
- $0.0
- Employees
- 15
- Location
- New York, NY
- Founding
- 10/1988
- Data as of
- 12/2021
- EIN
- 38-2813140
Organization Overview
The Ehlers-Danlos Society, operating under the name Ehlers-Danlos Society, is located in New York, NY. The organization was established in 1988. According to its NTEE Classification (E99) the organization is classified as: Health Care N.E.C., under the broad grouping of Health Care and related organizations. As of 12/2022, Ehlers-Danlos Society employed 15 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Ehlers-Danlos Society is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.
For the year ending 12/2021, Ehlers-Danlos Society generated $4.2m in total revenue. This organization has experienced exceptional growth, as over the past 7 years, it has increased revenue by an average of 35.6% each year . All expenses for the organization totaled $3.4m during the year ending 12/2021. While expenses have increased by 28.1% per year over the past 7 years. They've been increasing with an increasing level of total revenue. You can explore the organizations financials more deeply in the financial statements section below.
Since 2021, Ehlers-Danlos Society has awarded 12 individual grants totaling $2,165,365. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2021
Describe the Organization's Mission:
Part 3 - Line 1
THE EHLERS-DANLOS SOCIETY IS 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.WE PROVIDE GLOBAL LEARNING CONFERENCES, COLLABORATIVE RESEARCH, EDUCATION INITIATIVES, AWARENESS CAMPAIGNS, ADVOCACY, COMMUNITY-BUILDING, AND CARE FOR THE EDS AND HSD POPULATION.
Describe the Organization's Program Activity:
Part 3 - Line 4a
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 IN TO 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.
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.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Lara Bloom CEO | OfficerTrustee | 50 | $0 |
Elizabeth Herndon Director | Trustee | 1 | $0 |
Melanie Macleod Director | Trustee | 1 | $0 |
Edward Fitzgerald III Director | Trustee | 1 | $0 |
Woodrow Gandy Director | Trustee | 1 | $0 |
Susan Haskel Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Total Revenue from Contributions, Gifts, Grants & Similar | $4,066,340 |
| Investment income | $58 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | -$63,245 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | $4,162 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $4,237,967 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic individuals. | $24,840 |
| Grants and other assistance to Foreign Orgs/Individuals | $659,159 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $231,459 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $667,763 |
| Pension plan accruals and contributions | $3,460 |
| Other employee benefits | $12,248 |
| Payroll taxes | $78,325 |
| Fees for services: Management | $129,955 |
| Fees for services: Legal | $9,161 |
| Fees for services: Accounting | $52,246 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $287,266 |
| Advertising and promotion | $5,918 |
| Office expenses | $46,557 |
| Information technology | $43,015 |
| Royalties | $0 |
| Occupancy | $3,268 |
| Travel | $33,138 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $22,401 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $36,520 |
| Insurance | $7,903 |
| All other expenses | $0 |
| Total functional expenses | $3,433,295 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $1,891,649 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $202,087 |
| Accounts receivable, net | $624,490 |
| Loans from Officers, Directors, or Controlling Persons | $0 |
| Loans from Disqualified Persons | $0 |
| Notes and loans receivable | $0 |
| Inventories for sale or use | $0 |
| Prepaid expenses and deferred charges | $87,894 |
| Investments—publicly traded securities | $2,094 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $11,052 |
| Other assets | $0 |
| Total assets | $2,819,867 |
| Accounts payable and accrued expenses | $298,322 |
| Grants payable | $272,325 |
| Deferred revenue | $41,474 |
| Tax-exempt bond liabilities | $0 |
| Escrow or custodial account liability | $0 |
| Loans and other payables to any current Officer, Director, or Controlling Person | $0 |
| Secured mortgages and notes payable | $0 |
| Unsecured mortgages and notes payable | $0 |
| Other liabilities | $0 |
| Total liabilities | $612,121 |
| Net assets without donor restrictions | $141,219 |
| Net assets with donor restrictions | $2,066,527 |
| Capital stock or trust principal, or current funds | $0 |
| Paid-in or capital surplus, or land, building, or equipment fund | $0 |
| Total liabilities and net assets/fund balances | $2,207,746 |
Grants Awarded
Over the last fiscal year, The Ehlers-Danlos Society has awarded $1,352,365 in support to 7 organizations.
| Grant Recipient | Amount |
|---|---|
CHILDREN'S HOSPITAL CORPORATION PURPOSE: RESEARCH GRANT | $158,565 |
CARLE FOUNDATION HOSPITAL PURPOSE: HEDGE ANALYSIS GRANT | $84,980 |
MEDICAL UNIVERSITY OF SOUTH CAROLINA PURPOSE: RESEARCH GRANT | $150,000 |
JOHN HOPKINS UNIVERSITY PURPOSE: RESEARCH GRANT | $150,000 |
THE PENNSYLVANIA STATE UNIVERSITY PURPOSE: BASCOM GRANT | $30,000 |
THE BROAD INSTITUTE PURPOSE: RESEARCH GRANT | $766,545 |