The EDNF provides many
benefits to its membership and the larger EDS community. You can read what some
of our members have written about the Foundation and our message boards, or
you can learn about the key benefits that membership in the EDNF brings by selecting
one of the following:
The secure members
area of the website contains over 200 message
boards. As of April 2007, there are over 46,000 individual posts on the
EDNF message boards. This unique source of information on EDS has been created
by over 2,000 families or individual EDNF members who are currently using the
system. The information resource is currently growing at the rate of over 30
new posts a day.
The system is designed
to allow members to share their knowledge on EDS in a safe and secure environment.
The message boards are restricted to members so that people can feel safe and
secure sharing their personal information, their medical histories, their feelings
and their ideas. There are message boards for kids, teenagers, and families,
and the privacy and security of members is important
to the EDNF.
If you are looking for
information on a specific topic, you can search the entire system. What does
this mean to you, the individual or the family dealing with EDS? Read what some of our members have said the message boards mean to them.
The ability for members to get in touch with each other, learn about the different
experiences of EDS, share their knowledge and develop lasting relationships
is what has driven the growth of www.ednf.org. With the launch of the new site
in March 2006, EDNF is offering new improved message boards, chat rooms and
community networking tools.
The foundation is
continuously developing and updating educational materials for its
members, health care professionals and others seeking information on
EDS. Read more about our CD-Roms, Medical Reference Guides, Brochures,
Posters and more.
Connections, EDNF's newsletter, is published on a quarterly basis. With
information covering all areas of our mission and containing medical articles
approved by the EDNF Professional
Advisory Network, it is one of the most popular benefits and a definite
member favorite. At the present time, approximately 2,500 people receive our
The hinge is a monthly electronic newsletter sent out to our membership. This allows our supporters to keep informed about our foundation and the busy members who keep it going.
EDNF has sponsored fourteen national conferences since 1988. Nine
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. The next conference will be announced soon.
Your membership in the EDNF helps to find a cure as EDNF sponsors
private research into the diagnosis, causes, and treatment of EDS. EDNF has
spent over $140,000
on research projects in the last two years. Join
us and help us continue this exciting progress.