The Ehlers-Danlos Society
- Assets
- $2.2m
- Revenue
- $2.2m
- Investments
- $0.0
- Employees
- 14
- Location
- New York, NY
- Founding
- 10/1988
- Data as of
- 12/2020
- 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 12/2021, Ehlers-Danlos Society employed 14 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 12/2020, Ehlers-Danlos Society generated $2.2m in total revenue. This organization has experienced exceptional growth, as over the past 6 years, it has increased revenue by an average of 28.2% each year . All expenses for the organization totaled $1.7m during the year ending 12/2020. While expenses have increased by 18.6% per year over the past 6 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.
Form
990
Mission & Program ActivityExcerpts From the 990 Filing
TAX YEAR
2020
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
WE HELP BRING TOGETHER AND FACILITATE HEALTH PROFESSIONALS FROM ALL OVER THE WORLD TO WORK ON EQUITABLE ACCESS TO MANAGEMENT AND CARE. AT THE CORE OF OUR WORK IS OUR GLOBAL EDS AND HSD REGISTRY WHICH PROVIDES OPPORTUNITIES FOR NEW RESEARCH, GENETIC DISCOVERIES, PROGRESSION AND UNDERSTANDING AMONGST THESE CONDITIONS. WE HAVE AWARDED GLOBAL FUNDING FOR RESEARCH GRANTS WHICH CONTRIBUTE TO THE GLOBAL RESEARCH PRIORITIES, AND IT IS OUR GOAL TO ENSURE CONSISTENT AND GROUND-BREAKING RESEARCH SUPPORT TO HELP ALL THOSE IMPACTED BY THESE CONDITIONS ALL OVER THE WORLD.
THE EHLERS-DANLOS SOCIETY ORGANIZES MEDICAL AND SCIENTIFIC SYMPOSIUMS TO FOCUS ON THE LATEST RESEARCH, DIAGNOSTIC CRITERIA, PATHWAYS AND GUIDELINES FOR MANAGEMENT AND CARE. WE MANAGE THE WORK OF VARIOUS COLLABORATIVE COALITIONS SUCH AS THE COMMUNITY COALITION, AHEAD COALITION, HYPERMOBILITY BIOLOGY NETWORK AND FACILITATE THE WORK OF THE EDS AND HSD INTERNATIONAL CONSORTIUM. WE HOLD ANNUAL VIRTUAL AND IN-PERSON SCIENTIFIC CONFERENCES FOR HEALTH PROFESSIONALS WITH CME ACCREDITATION AND ANNUAL VIRTUAL AND IN-PERSON EDUCATIONAL CONFERENCES UNITING OUR COMMUNITY, WHICH PROVIDE OPPORTUNITIES TO INTERACT, OFFER SUPPORT AND EDUCATE FROM WORLD-LEADING EXPERTS IN EDS AND HSD.
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Board, Officers & Key Employees
| Name (title) | Role | Hours | Compensation |
|---|---|---|---|
Eric Alley Finance Director | Officer | 40 | $72,150 |
Lara Bloom President | OfficerTrustee | 40 | $0 |
John Zonarich Secretary | OfficerTrustee | 5 | $0 |
Rob Rubin Treasurer | OfficerTrustee | 5 | $0 |
Susan Hawkins Chair | OfficerTrustee | 5 | $0 |
Sandra Chack Director | Trustee | 1 | $0 |
Financial Statements
| Statement of Revenue | |
|---|---|
| Total Revenue from Contributions, Gifts, Grants & Similar | $2,154,718 |
| Investment income | $110 |
| Tax Exempt Bond Proceeds | $0 |
| Royalties | $0 |
| Net Rental Income | $0 |
| Net Gain/Loss on Asset Sales | $1,494 |
| Net Income from Fundraising Events | $0 |
| Net Income from Gaming Activities | $0 |
| Net Income from Sales of Inventory | -$12,391 |
| Miscellaneous Revenue | $0 |
| Total Revenue | $2,230,715 |
| Statement of Expenses | |
|---|---|
| Grants and other assistance to domestic individuals. | $16,000 |
| Grants and other assistance to Foreign Orgs/Individuals | $505,437 |
| Benefits paid to or for members | $0 |
| Compensation of current officers, directors, key employees. | $82,101 |
| Compensation to disqualified persons | $0 |
| Other salaries and wages | $562,432 |
| Pension plan accruals and contributions | $7,235 |
| Other employee benefits | $17,816 |
| Payroll taxes | $32,598 |
| Fees for services: Management | $85,229 |
| Fees for services: Legal | $2,469 |
| Fees for services: Accounting | $43,991 |
| Fees for services: Lobbying | $0 |
| Fees for services: Fundraising | $0 |
| Fees for services: Investment Management | $0 |
| Fees for services: Other | $54,650 |
| Advertising and promotion | $7,660 |
| Office expenses | $41,658 |
| Information technology | $32,994 |
| Royalties | $0 |
| Occupancy | $2,855 |
| Travel | $77,918 |
| Payments of travel or entertainment expenses for any federal, state, or local public officials | $0 |
| Conferences, conventions, and meetings | $31,966 |
| Interest | $0 |
| Payments to affiliates | $0 |
| Depreciation, depletion, and amortization | $27,917 |
| Insurance | $2,897 |
| All other expenses | $0 |
| Total functional expenses | $1,684,441 |
| Balance Sheet | |
|---|---|
| Cash—non-interest-bearing | $1,575,244 |
| Savings and temporary cash investments | $0 |
| Pledges and grants receivable | $354,595 |
| Accounts receivable, net | $107,379 |
| 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 | $92,679 |
| Investments—publicly traded securities | $2,818 |
| Investments—other securities | $0 |
| Investments—program-related | $0 |
| Intangible assets | $57,935 |
| Other assets | $0 |
| Total assets | $2,191,805 |
| Accounts payable and accrued expenses | $405,238 |
| Grants payable | $354,595 |
| Deferred revenue | $14,843 |
| 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 | $94,357 |
| Other liabilities | $0 |
| Total liabilities | $869,033 |
| Net assets without donor restrictions | $0 |
| Net assets with donor restrictions | $0 |
| 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 | $1,322,772 |
Grants Awarded
Over the last fiscal year, The Ehlers-Danlos Society has awarded $813,000 in support to 5 organizations.
| Grant Recipient | Amount |
|---|---|
Redwood City, CA PURPOSE: RESEARCH GRANT | $200,000 |
Charleston, SC PURPOSE: RESEARCH GRANT | $200,000 |
Kansas City, MO PURPOSE: HEDS GRANT | $200,000 |
Baltimore, MD PURPOSE: RESEARCH GRANT | $150,000 |
UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL PURPOSE: RESEARCH GRANT | $63,000 |
Grants Recieved
Over the last fiscal year, we have identified 1 grants that The Ehlers-Danlos Society has recieved totaling $6,000.
| Awarding Organization | Amount |
|---|---|
Christian Family Foundation Richmond, VA PURPOSE: HEALTH CARE | $6,000 |
Peer Organizations
| Organization Name | Assets | Revenue |
|---|---|---|
Schenectady Family Health Services Inc Schenectady, NY | $19,045,497 | $22,478,656 |
Service Employees International Union Harrisburg, PA | $14,538,345 | $18,771,689 |
Clifford W Beers Guidance Clinic Incorporated New Haven, CT | $9,137,010 | $18,265,945 |
Bob Woodruff Family Foundation Inc New York, NY | $14,267,455 | $13,208,242 |
Hospice & Palliative Care Buffalo Inc Cheektowaga, NY | $16,859,718 | $13,710,188 |
Independence Care System Inc Brooklyn, NY | $10,653,055 | $18,543,015 |
Monmouth Medical Center Faculty Practice Plan Inc Oceanport, NJ | $1,624,084 | $5,288,901 |
Service Employees International Union Hartford, CT | $21,649,035 | $16,938,166 |
Bridging Access To Care Inc Brooklyn, NY | $3,861,592 | $15,321,105 |
Committee Of Interns & Residents Long Island City, NY | $15,857,435 | $14,995,112 |
Central Jersey Family Health Consortium Inc North Brunswick, NJ | $3,919,804 | $12,746,145 |
Clara Martin Center Inc Randolph, VT | $9,599,904 | $14,620,066 |