Where is the main office?
Ehlers-Danlos National Foundation
1760 Old Meadow Road, Suite 500
McLean, Virginia 22102
Who do I contact about membership questions?
or call (703) 506-2892.
When does Loose Connections come out?
Our PDF magazine is emailed to members at the end of every quarter. Access members may read Loose Connections online after the mailing. Previous editions of Loose Connections are available online.
What is the Hinge?
The Hinge is a short email update for our members, sent each month other than the months when Loose Connections is published. It contains news about EDNF and upcoming events. If you have an item you wish to be included, please submit it to the editor by the 10th of the month.
There is no local group in my area; how do I get one started?
Please contact the office and we will refer you to local groups that may be nearest to you.
If you wish to start a group, please email
and we will contact you with information about starting a new group in your area.
Why do I have to be a member to view the message boards or belong to a local group?
The privacy and security of our members are of paramount importance to EDNF, and we will do everything we can to ensure our members may freely discuss their issues among their peers without others watching.
The EDNF community is strong and grows stronger with each member; membership is essential to make your combined voices easily heard.
I want to recommend a doctor for the PAN, what do I do?
EDNF would like to expand awareness of EDS and optimal diagnosis and treatment among the healthcare community. If you know of a professional that you would recommend, please forward their name, contact information, their CV and why you would nominate them. The office will forward this information to the PAN Liaison and Board of Directors for consideration.
Why don't you refer specific doctors?
Each person is unique, and each doctor-patient relationship is unique. The perfect doctor for one may not be the best doctor for another and the Foundation cannot judge who would be best for any case.
The laws governing the function of the Foundation prohibit EDNF from endorsing or referring any practitioner, facility or physician. We do have a Physician's Directory available to EDNF members that lists doctors who have treated EDSers and who have agreed to be listed; these listings cannot and should not be considered referrals, however.
A reporter has contacted me, what do I do?
EDNF encourages media coverage of EDS, but we must very carefully protect our image. We would also like to share any publicity across the nation, so we ask that should you be contacted, please call the Director of Local Groups or the main office at (703) 506-2892 and let us know.
We have a PDF document for members, The Communications Guide, which has some talking points, radio Public Service Announcements, and Literature and Mediathat you may wish to use.
I want to have a fundraiser for EDNF, what can I do?
If you are a member of a local group, contact your leader and discuss.
Please visit the Fundraising Ideas page on our site if you are looking for some ideas.
EDNF cannot provide you with start up money, but we will help you in whatever way we can. Some of our local groups are very good at fundraising, and will be happy to share their experience and materials such as samples of letters, etc. Fundraisers to benefit EDNF have included coffee sales, pancake breakfasts, raffles, even rock concerts!