Published: 14/10/2019 Tags: The Ehlers-Danlos Society News

EDNF Fraudulent website impersonation

After becoming The Ehlers-Danlos Society we launched the website  – the EDNF website was closed down.

The old website has unfortunately been taken over and is illegally impersonating The Ehlers-Danlos National Foundation, and consequently The Ehlers-Danlos Society. We have filed all necessary reports with the FBI as this is an internet crime that falls under their jurisdiction. We are also working with our attorney to legally reclaim the old URL through the court system as it is an illegal impersonation.

The images being used across the counterfeit website are from different EDS charities, individual EDS blogs and other sources that are being misrepresented. The donation button on this website is non-transactional, however it does have a contact form to discuss donations. Please note that this is an illegal enticement of donations that do not go to The Ehlers-Danlos Society or any aspect of our mission.

The fraudulent website also has so-called “Sponsored Resources” with discount codes. These sponsors listed are bogus. These codes do not work on any of the real Sponsored Resources listed on the official Society website. Any new companies that are being listed on the fraudulent site have been asked to file FBI reports as they are now also being violated.

Unfortunately a challenge we face is that our legal name with the IRS has not yet been changed and remains The Ehlers-Danlos National Foundation. EDNF was closed in 2017/2018 IRS round and the new name will soon be on file with the IRS. This will then automatically mean all remaining sources will reflect the updated name of the organization.

If you have any concerns please contact The Ehlers-Danlos Society or visit


The Ehlers-Danlos National Foundation’s evolution into The Ehlers-Danlos Society

Founded by Nancy Rogowski in 1985, 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.

In late 2015, with the expansion of its board of directors to include international leaders in Ehlers-Danlos syndrome research, nonprofit management, fundraising, and communications, EDNF formed a comprehensive international medical board comprised of leading experts involved with the 2016 NYC symposium.

On May 1, 2016—to coincide with Ehlers-Danlos Awareness Month and the 2016 Ehlers-Danlos International Symposium—the Ehlers-Danlos National Foundation, in partnership with EDS experts from around the globe, officially became The Ehlers-Danlos Society. Although born from EDNF – we are a new organisation, with new leadership, new board members, new staff and a new global vision and mission. In just 2 years we have donated more money to EDS research than has ever been done for EDS and HSD in over two decades. We have built the first EDS and HSD Global Registry, and we facilitate the work of the International Consortium – amongst many other advocacy, support and educational efforts – such as EDS ECHO. We host at least one Scientific meeting a year, multiple educational learning conferences around the world – and have committed to support the continued progress and development to improve the lives of all those impacted by these conditions through our mission.

The evolution of The Ehlers-Danlos Society is the result of more than 30 years of tireless determination.

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