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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.