Contact Information

Ehlers-Danlos National Foundation comprises a CEO and a group of volunteers working together to deliver the EDNF mission. Knowing whom to contact is important to obtain the information you need faster. 

If you are looking for information about Ehlers-Danlos syndrome for yourself or a family member, the most immediate way is through the online community. By joining EDNF, you have access to a large number of caring members willing to provide suggestions and support. You can also contact the leader of the local group nearest you.

Local Group Leaders are far more likely to have better answers to your questions about EDS than the administrative staff in the National Office. EDNF does NOT hold a list of physician referrals; there are however, suggested referrals available by members to members in our physician's directory.

Members of the Professional Advisory Network can be contacted directly through their institutions.

For questions concerning donations, membership, operations and EDNF's Board of Directors, please contact the National Office.