Program areas at Ehlers-Danlos Society
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.
Grants made by Ehlers-Danlos Society
Who funds Ehlers-Danlos Society
Grants from foundations and other nonprofits
Personnel at Ehlers-Danlos Society
| Name | Title | Compensation | Date of data |
|---|
| Lara Bloom | Chief Executive Officer | $0 | 2023-12-31 |
| Alan Hakim | Education Director / Chief Operations Officer | | 2022-01-30 |
| Eric Alley | Finance Director | $77,759 | 2023-12-31 |
| Erin Simons | Marketing Director | | 2022-01-30 |
| Shani Weber | Community Education Director / Community and Advocacy Director | | 2022-01-30 |
| ...and 10 more key personnel |
Financials for Ehlers-Danlos Society
| Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
|---|
| Total grants, contributions, etc. | $9,359,005 | $3,933,892 | 137.9% |
| Program services | $395,170 | $572,083 | -30.9% |
| Investment income and dividends | $543 | $0 | 999% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $0 | $0 | - |
| Net income from fundraising events | $0 | $0 | - |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $9,334 | $8,553 | 9.1% |
| Miscellaneous revenues | $1 | $0 | 999% |
| Total revenues | $9,764,053 | $4,514,528 | 116.3% |
Organizations like Ehlers-Danlos Society
| Organization | Type | Location | Revenue |
|---|
| Fistula Foundation | 501(c)(3) | San Jose, CA | $14,403,216 |
| BrightFocus Foundation | 501(c)(3) | Clarksburg, MD | $43,893,797 |
| CurePSP | 501(c)(3) | New York, NY | $3,308,947 |
| Urology Care Foundation | 501(c)(3) | Linthicum HTS, MD | $4,587,188 |
| Gbscidp Foundation International | 501(c)(3) | Conshohocken, PA | $6,141,343 |
| MyFace | 501(c)(3) | New York, NY | $9,870,400 |
| Family Reach Foundation | 501(c)(3) | Boston, MA | $8,336,590 |
| American Brain Foundation | 501(c)(3) | Minneapolis, MN | $5,946,773 |
| Hilarity for Charity (HFC) | 501(c)(3) | Beverly Hills, CA | $2,853,252 |
| The VIVA Foundation | 501(c)(3) | Palm Springs, CA | $5,717,586 |
Data update history
July 17, 2024
Updated personnel
Identified 4 new personnel
July 10, 2024
Posted financials
Added Form 990 for fiscal year 2023
July 8, 2024
Used new vendors
Identified 3 new vendors, including , , and
Nonprofit Types
Grantmaking organizationsDisease research fundraisersProfessional associationsDisease-focused nonprofitsCharities
Issues
HealthMedical disciplines
Characteristics
Conducts researchOperates internationallyNational levelTax deductible donationsAccepts online donations
General information
- Address
- 447 Broadway 2nd Floor 670
- New York, NY 10013
- Metro area
- New York-Newark-Jersey City, NY-NJ-PA
- County
- New York County, NY
- Website URL
- ehlers-danlos.com/Â
- Phone
- (410) 670-7577
IRS details
- EIN
- 38-2813140
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1988
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G90: Medical Disciplines
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
California AB-488 details
- AB 488 status
- May Operate or Solicit for Charitable Purposes
- Charity Registration status
- Current - In Process
- FTB status revoked
- Not revoked
- AG Registration Number
- 110067
- FTB Entity ID
- 1774856
- AB 488 data last updated ("as-of") date
- 2024-10-16
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