Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that affects connective tissue. There are six different types depending upon how the skin, joint and organs are affected. Though EDS is believed to affect 1 in 5,000 to 1 in 10,000 people, it is frequently not diagnosed until adulthood or not diagnosed at all. The Ehlers-Danlos National Foundation’s mission is to educate health care professionals and families with EDS so that diagnosis is easier to make and treatments are easier to plan.
EDNF
The Ehlers-Danlos National Foundation (EDNF) was established in 1985 by Nancy Hanna Rogowski (1957-1995) as she searched for emotional support after being diagnosed with EDS. Her efforts blossomed into an international information center dedicated to creating resources for anyone who has EDS or supports patients or loved ones with it. A non-profit organization, EDNF now has over 2,000 members and over 40 volunteer run groups throughout the US.
EDNF provides an active community resource for those affected by EDS. Message boards and chat rooms are available to members looking for advice and emotional support for themselves or loved ones. Local groups give an opportunity to form face-to-face relationships with others, and an avenue to assist with spreading information.
Communication
A primary focus of EDNF is accurate information. Their Professional Advisory Network is in place to ensure that all medical information on the website is correct.
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