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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Ehlers-Danlos National Foundation

a/k/a: EDNF


7918 Jones Branch Drive
Suite 300
McLean, VA 22102







Email Address




The Ehlers-Danlos National Foundation is a voluntary, self-help, non-profit organization that is dedicated to creating resources for the Ehlers-Danlos syndrome (EDS) community. Ehlers-Danlos syndrome is a group of inherited connective tissue disorders characterized by abnormalities of the skin, ligaments, and internal organs. Although symptoms and physical features may vary greatly depending upon the specific form of EDS present, many affected individuals may have thin, fragile, hyperextensible skin that may bruise easily; abnormally loose joints that are prone to dislocation; and widespread tissue fragility with bleeding and poor healing of wounds. Established in 1985, the foundation serves as an informational link to the medical and research community on behalf of people who have been personally affected EDS. EDNF supports medical research, produces educational and support materials and a quarterly newsletter, holds annual conference, and has 44 local groups which provide support for the EDS community throughout the country.

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