There are 55 communities throughout the United States where 5 or more members are located. If branches and support groups are formed in all of these areas, more than half our present members will be served directly. Please contact the Foundation for a list of the educational materials that are available. The Foundation, upon request, will send members with Ehlers-Danlos Syndrome, the names of three other members in the local area who have signed release. This service facilitates communication between members, allowing them to give and receive necessary emotional support.
Members can update and change the release form at any time.
EDNF does not lend, trade or sell its membership list to any individual, group or organization. EDNF has sponsored ten national conferences since 1988. Six of the conferences had either a research or educational focus with four conferences being a combination of both. Health care professionals, and those affected by EDS and their families are encouraged to attend. EDNF Membership is open to anyone who wishes to join.