New York · Nonprofit
EHLERS-DANLOS SOCIETY
EHLERS-DANLOS SOCIETY (New York) receives grants from 66 organizations whose IRS filings report $10,062,936 to it, the largest being VANGUARD CHARITABLE ENDOWMENT PROGRAM ($2,899,065). 26 of them have funded it in more than one year, and 51% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $9.6M
- Funders on record
- 66
- Grants received
- $10M
- Net assets
- $7.8M
What Ehlers-Danlos Society does
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.
As stated on its FY2025 Form 990.
Programs
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.
$7,322,223 spentof which $6,974,640 as grants$624,519 earned by the program84% of program spendingThe 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.
$1,394,709 spent$127,913 earned by the program16% of program spending
The 2 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $8,716,932.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2022 to 2023, from $3.2M to $8.7M (+174%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
92% of EHLERS-DANLOS SOCIETY’s revenue is contributions — more donation-reliant than the typical peer (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 1 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Lara Bloom
CEO
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 3 funders to 24 funders, grant income rose $314k → $2.0M.
15 of 66 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 51% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of EHLERS-DANLOS SOCIETY’s funders (the co-funder graph). Top 30 of 66 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
EHLERS-DANLOS SOCIETY leans on a few funders — its largest provides 29% of grant income and the top three 74%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
54% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund EHLERS-DANLOS SOCIETY.
Largest funder’s share by year: 2017 99% · 2018 95% · 2019 84% · 2020 71% · 2021 51% · 2022 47% · 2023 71% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
37% of EHLERS-DANLOS SOCIETY's funders are still giving 3 years after their first grant; 39% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
51% of EHLERS-DANLOS SOCIETY's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $4.9M that is directly attributable, 59% of it comes from New York funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $5.2M arriving through sponsors registered in 13 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
EHLERS-DANLOS SOCIETY has grown faster than three-quarters of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Organizations like EHLERS-DANLOS SOCIETY
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In New York
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
92% of spending goes to programs.
Governance
Public support
75%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 31 states
Part of a family of 1 related entity
- The Ehlers-Danlos Society UK · exempt
Screen this organization
A dated, signed PDF of the compliance screen for EHLERS-DANLOS SOCIETY: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds EHLERS-DANLOS SOCIETY?
- EHLERS-DANLOS SOCIETY (New York) receives grants from 66 organizations whose IRS filings report $10,062,936 to it, the largest being VANGUARD CHARITABLE ENDOWMENT PROGRAM ($2,899,065). 26 of them have funded it in more than one year, and 51% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does EHLERS-DANLOS SOCIETY have?
- IRS filings report 66 organizations giving $10,062,936 in grants to EHLERS-DANLOS SOCIETY, 26 of which have funded it in more than one year.
- Who is the largest funder of EHLERS-DANLOS SOCIETY?
- VANGUARD CHARITABLE ENDOWMENT PROGRAM is the largest funder on record, with $2,899,065 in grants. The full list of funders is on this page.
- How can an organization like EHLERS-DANLOS SOCIETY find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in New York. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 66 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 22, 2026. What this page cannot tell you · view filing