Resources- Specific Diagnosis Card Catalog- Ehlers-Danlos Syndrome

Who to Contact

Ehlers-Danlos National Foundation (EDNF)
6399 Wilshire Boulevard, Suite 200
Los Angeles, CA 90048
323-651-3038 (phone)
323-651-1366 (fax)
E-mail: staff@ednf.org
Web: www.ednf.org

This organization seeks to provide emotional support and updated information to those affected by Ehlers-Danlos syndrome and to their family members. In addition, EDNF serves as a vital information link to and from the medical community. It desires to inspire and support research in the field of connective tissue disorders -- specifically Ehlers-Danlos syndrome.

The Foundation publishes a quarterly newsletter, Loose Connections, which provides current information on medical advances in EDS, as well as a means to share in the everyday experiences of living with EDS. In addition, a computerized database is maintained which allows interested members to communicate with one another. Local Branches and support groups are forming throughout the U.S. These local branches enable members to meet and network with others affected by EDS, thus decreasing the feeling of isolation so many of us know all so well. Learning conferences are held in various locations throughout the country in an effort to allow patients, family members and medical professionals the opportunity to share information about EDS.

Where to go to Chat with Others

Ehlers Danlos Support Club
This club is for those who have Ehlers-Danlos syndrome, aninherited connective tissue disease.

EDSers
This is a semi-moderated group for people with EDS (Ehlers Danlos syndrome) and folks interested in learning more about it. Topics permissible include living with EDS, finding medical assistance, coping strategies, pain relief, alternative health care, and other EDS-related subjects.

CEDA
Welcome to the Canadian Ehlers Danlos Associations' EDS listserv. This is a family and we discuss ehlers danlos syndrome here, and all things related to EDS.

Learn More About It

An Introduction to Ehlers-Danlos Syndrome

About Ehlers-Danlos Syndrome
From Ehlers-Danlos National Foundation (EDNF)

Questions and Answers about Heritable Disorders of Connective Tissue
From the National Institute of Arthritis and Musculoskeletal and Skin Diseases

Types of Ehlers-Danlos Syndrome
From the Ehlers-Danlos National Foundation (EDNF)

Links

Ehlers-Danlos National Foundation (EDNF)

Ehlers Danlos Syndrome UK Support Group
United Kingdom

EDS Today Website