Impact Reports and Financials

Our strength begins with HOPE

Your gifts have enabled us to strengthen research, education, awareness, and advocacy and support — worldwide.  Togetherwe will continue to pursue our shared mission, supporting our community through these hards times, and giving hope to those affected by the Ehlers-Danlos syndromes and hypermobility spectrum disorders. Read on to hear what we have accomplished together in our annual impact report and video update!

Headquartered in New York, NY, The Ehlers-Danlos Society is a registered 501c3 nonprofit organization in the United States and a registered charity in the United Kingdom.

USA

As a 501c3 organization, your donation is a tax-deductible charitable contribution. EIN# 38-2813140. To donate by mail, send checks (payable to The Ehlers-Danlos Society) to 1732 1st Ave. #20373; New York, NY 10128; USA. Certain states require written disclosures for nonprofit organizations soliciting contributions. Please click here for individual state disclosures.

United Kingdom

As a registered charity, your donation is a tax-deductible charitable contribution and eligible for Gift Aid. Registered Charity Number 1180984. To donate by mail, send check (payable to The Ehlers-Danlos Society) to Office 7; 35-37 Ludgate Hill; London, EC4M 7JN; UK.

IRS Forms 990

To view a 990, click on the year.

*The legal name change to The Ehlers-Danlos Society took effect in 2018, so legal documents until 2018 reflect The Society’s former name, the Ehlers-Danlos National Foundation [EDNF].

Historical EDNF 990s

GuideStar Seal of Transparency 2018 2018 Gold

The Ehlers-Danlos Society was originally established as a non-profit organization in the USA in 1985 as the Ehlers-Danlos National Foundation (EDNF) by Nancy Hanna Rogowski (1957–1995). The Ehlers-Danlos National Foundation (EDNF) filled a deep void for patients living with one of the most misunderstood and underdiagnosed syndromes in history. EDNF grew from one woman’s tireless efforts to find others with whom to share emotional support, into a vital information link to and from the medical community. Often existing on a shoestring, the impacts of EDNF’s contributions to the advancement of Ehlers-Danlos research, patient support, and public advocacy, have been felt around the world.

From the industriousness of Nancy Rogowski’s quest to learn more and to spark hope in others—to the volunteer efforts, initiative, and support of thousands to transform our understanding of Ehlers-Danlos in its many, often dangerous forms—The Ehlers-Danlos Society emerged in May 2016 as the very first truly international organization devoted entirely to global research and the support, advocacy, and advancement of Ehlers-Danlos patients, caregivers, and medical professionals.