EDS Support Group Directory in Development at www.EDSawareness.com
www.EDSawareness.com launched its new online resource at the EDNF Learning Conference last week in Cincinnati, Ohio. “We had an overwhelming response”, says John Ferman, Founder. “My wife passed away in 2008 – never knowing EDS was the cause of 30 years of chronic pain. This was the same year my daughter was diagnosed with EDS, after a 10-year search for answers. Our family’s challenges with diagnosis and healthcare is the reason I’m so passionate about increasing awareness about EDS”, Ferman explains.
“The public needs to know about EDS and the EDS community needs a method to locate EDS Support Groups. We are setup to help EDSers find and/or organize support groups in their local communities. Also, we are in the process of developing a directory of existing support groups. We will provide 5 free web site pages to each existing support group to promote and publicize their local organization. If there is no local support group in your area, we will help you organize a group and help set up your free web pages. We are in the process of locating existing support groups and will provide their leaders with names of individuals who want to join their group. If you are aware of an existing EDS Support Group, ask them to contact us at firstname.lastname@example.org to be included in the directory and get their Support Group on the map.”
We developed www.EDSawareness.com as an ‘Umbrella site’ for the EDS community.
Our goals and vision:
- Provide an informative resource for individuals suffering with EDS and their caregivers through www.EDSawareness.com
- Become a credible resource for those seeking information and referrals to reliable sources.
- Help support groups to organize and provide them a method to share and experience more socialized and personalized support.
- Educate the undiagnosed, and the public about Ehlers-Danlos Syndrome through various forms of media.
- Provide a resource for EDS recommended products and services through www.bodysupportstore.com and associated affiliates.
We welcome articles, videos, and all suggestions to make this site a valuable resource to the EDS community.
For more information, visit the site and contact us at email@example.com
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