Benefits of Joining

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:

Member-only message boards
-
Learn about EDS from over 46,000 posts of information
Online Community
-
Connect with others through EDNF's online community
Online Chat

 

Connect with other EDNF members and chat online right now 

Local Groups
-
Meet other members in your area
Educational Programs
-
Receive materials like Cd-Roms, Reference Guides, and more
Loose Connections
-
Read our popular and well respected quarterly newsletter
Learning Conferences
-
Attend one of our biannual events such as our next national conference in July 2010
Research
-
Help find a cure
Increase Awareness
-
Get involved and make a difference

 

Member-Only Message Boards
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.

Online Community
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.


Local Groups
Local Branches and Support Groups are being organized in communities throughout the Country. EDNF currently has more than 35 active local groups. With recent advances in volunteer involvement, EDNF Local groups are more active than at any time in the Foundation's history.


Educational Programs
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.

 

Loose Connections
Loose 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 newsletter.

 

The Hinge

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.


Learning Conferences
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.

Research
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.


Increase Awareness
EDNF produces a large amount of information and is visited over 250,000 times a year. The Medical professionals section received over 50,000 visits alone in the last 6 months of 2005. This information is accessed not only by members, but by doctors, nurses, therapists and the general public all over the world. The more health care professionals that are aware of EDS, the less likely it is that new cases will be misdiagnosed and the more likely it is that successful treatments will be found and shared. By becoming a member of the Foundation you are directly helping us in that role and ultimately enhancing your own options when dealing with EDS.

Join EDNF Today