Is this your organization?Claim your profile for free to personalize your presence and add a donate button. Learn more

Start Your Claim

Claiming and managing your profile is free. Enter any email you have access to. In the next step, we'll give you a small snippet to place on the organization's website to verify ownership.

Email address

We'll use this to process your claim and send important profile updates.

Need help? Contact us

: Verified by RoundPaper

FY 2024

Verified NonprofitLast Filed 2024EIN 38-2813140

The Ehlers-Danlos Society

NEW YORK, NYNTEE: E99ZFounded 1988Website

mission statement

The ehlers-danlos society is a global orgnization dedicated to advancing and accelerating research and education in ehlers-danlos syndromes (eds) and hypermobilitiy spectrum disporders (HSD). We support the development of effective and equitable eds and HSD therapies and work collavoratively to impove the lives of individuals affected by eds and HSD.

Share this profile

Total Revenue

$5.0M

FY 2024

Program Spending

69.4%

of total expenses

Known Funders

2019–2024 filings

Key Metrics (FY 2024)

The Numbers

$8.2M

Total Assets

$7.7M net

20.39 mo

Operating Reserves

FY 2024

Active Programs

FY 2024

Total Employees

FY 2024

Funding Track Record

Backed by 41 Institutional Funders

$8.7M raised across 90 grants · +$291K committed (2019–2024 filings)

Funder Geography

Funders across 18 states (2019–2024 filings)

Institutional Funding by Year

PaidCommittedBoth

Funder	Location	Total Awarded
Vanguard Charitable Endowment Program	SOUTHEASTERN, PA	$2,856,881
Mike & Sofia Segal Foundation	NEW YORK, NY	$2,812,216
Network for Good Inc	Washington, DC	$1,229,131
Micky and Madeleine Arison Family Foundation	CORAL GABLES, FL	$1,000,000
American Online Giving Foundation Inc	NEWARK, DE	$187,497
Hugh and Charlotte Maclellan Charitable	CHATTANOOGA, TN	$165,000
Paypal Charitable Giving Fund	WASHINGTON, DC	$107,514
Amazonsmile Foundation	SEATTLE, WA	$45,527
Abramson Family Foundation Inc	PURCHASE, NY	$40,125
Fidelity Investments Charitable Gift Fund	BOSTON, MA	$35,422

Total tracked: $8,718,999 across 90 grants · +$291,138 committed across 3 commitments (2019–2024 filings)

Totals reflect grants as reported on funder tax returns. Timing may not match recipient revenue: funder and recipient fiscal years often differ, and grants paid by a funder in one year may be recognized by the recipient in a different year.

Programs (FY 2024)

What They Do

$2.1M in expenses

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.

$1.0M in expenses

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.

Financial History