Only 5% of Ehlers-Danlos Syndrome (EDS) sufferers are correctly diagnosed. It’s been estimated that EDS affects more than 1 in 5,000 people worldwide. But, experts think that's conservative.
Each year in the US, 650,000 additional sufferers are un-diagnosed or misdiagnosed due to physician oversight or lack of knowledge about EDS.
Most people with EDS - and the people who care for them - don’t know where to turn for information, advice and help with the challenges surrounding EDS.
The mission of EDS Awareness is to ensure greater understanding of Ehlers-Danlos Syndrome, both in the general public and within the medical community. Driven by participation and shared learning, the website content is presented “by EDSers, for EDSers”. We hope to improve the quality of life for those afflicted with EDS – and those who care for them. Tell someone about EDS today!
Click here for more information about Dr. Henderson.
Click here for more about Kristin Means.
Directory of Local Support Groups
EDSawareness.com celebrated its 1 year anniversary this August at the EDNF Learning Conference in Providence, RI.
We help EDSers find or organize support groups in their local communities. Our free program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more... If you are aware of an existing EDS Support Group, ask them to contact us at email@example.com to be included in the directory. Read more...
Recent Blog Updates
Dec 10, 2013
Ehlers-Danlos Syndrome was discussed on the daytime talk show, Katie. We are providing links to watch clips of the show, and encourage EDSers to add comments to the show’s website. There are 2 video clips from the Katie show: “Learn
Dec 9, 2013
On November 22, the FDA ordered the 23andMe company to stop marketing its product– $99 genetic test offered direct-to-consumers. The FDA warning letter indicated that the company hadn’t secured marketing authorization and expressed
Dec 8, 2013
Check out these product reviews from our EDS support group! **ALL proceeds go to help local EDS support groups and EDSawareness.com programs when you order from www.bodysupportstore.com Browse the store to find your EDS Christmas gift!
Dec 7, 2013
Emily has learned to deal with the challenges of raising 2 children despite her Ehlers-Danlos Syndrome. By EMMA INNES “A mother has been left devastated by a rare condition that leaves her barely able to cuddle her children. Emily Comber, 31,
Dec 5, 2013
Our presenter for December 4th was Dr. Carl Mentesana, DDS. His topic was: “EDS: A Dental Perspective“ Click Here for the recording Note: the presentation slides start after about 6 minutes into the
Dec 3, 2013
Bethany wants to celebrate Christmas by raising funds for toys at a local hospital. A LITTLE girl with a rare illness is defying her condition and taking on her own Christmas fundraising mission to help other poorly children. Bethany Hambleton,
Nov 29, 2013
“Good Morning America” reported about Ehlers-Danlos on Friday, 11/29/2013. We are providing a link to Watch the VIDEO of the TV segment. EDS awareness is one positive outcome of the tragic story about the Huber family’s false
Nov 27, 2013
We are excited to be offering this EDS Awareness Speaker Series for our EDS Membership. The sessions will be the 1st and 3rd Wednesdays at 9:00 pm EST. Our presenter for November 20th was Stephanie Gandomi, MS, CGC, LGC She is a Licensed