• WELCOME! ** Learn about our FREE programs in this fun video! ** It's about empowerment, education, team-building, local support groups... and EDS awareness!

  • FREE live Webinars offered 2x/month! Watch our keynote presentation by Dr. Brad Tinkle about Ehlers-Danlos Syndrome.

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Patrick Agnew about Foot & Ankle Issues with EDS.

  • FREE live Webinars offered 2x/month! Watch this presentation by Dr. Derek Neilson about EDS Hypermobility Type and what is needed to change the perception of this condition.

  • FREE Live Webinars offered 2x/month! Watch this presentation by Dr. John Mitakides: “Musculoskeletal Headaches in EDS”.

  • What is Ehlers-Danlos Syndrome? Dr. Henderson & Kristin Means describe the basics of EDS in this TV interview.

  • Watch this EDS patient's in-depth explanation of Ehlers-Danlos Syndrome and how she tackles her illness with a positive outlook.

  • Our FREE programs are made possible by BodySupportStore.com - Offering over 250 products recommended for EDSers, by EDSers. Please check out these helpful products at lowest allowable prices.

Is Ehlers-Danlos Syndrome rare - or just rarely diagnosed?

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. (According to a study in the UK.)

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 individuals affected by EDS – and those who care for them. Tell someone about EDS today!

Directory of Local Support Groups

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 there is no group in your area, we will help you survey interest and connect with local EDSers. Contact us at info@edsawareness.com for help or to be included in the directory.

Find a support group location by using the interactive map or the look-up menu below.

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Recent Articles
Lack of Clinical Understanding about Hypermobility Conditions and Treatment

Lack of Clinical Understanding about Hypermobility Conditions and Treatment

Aug 28, 2015

By Bill Schu. Many doctors do not understand the clinical significance of joint hypermobility.  This has a major impact on accessing appropriate treatments. Mobility is great. Hypermobility? Less great. In the joints, hypermobility leads to

Free Webinar: “Physical Therapy for Sexual Dysfunction in EDS” – Sept. 1, 2015

Free Webinar: “Physical Therapy for Sexual Dysfunction in EDS” – Sept. 1, 2015

Aug 25, 2015

On September 1, 2015, Jennifer Ortiz presents “Physical Therapy for Sexual Dysfunction in EDS”. Jennifer spoke at the EDNF Learning Conference in

New Awareness Materials for EDS — “Hiding in Plain Sight” Brochure. NOW you can print through Vistaprint!

New Awareness Materials for EDS — “Hiding in Plain Sight” Brochure. NOW you can print through Vistaprint!

Aug 21, 2015

Available now to print through Vistaprint! This new EDS brochure is designed for general awareness of EDS. It's suitable for doctors, teachers, and relatives who just don’t "get it".

Free Webinar: “Support Groups for Ehlers-Danlos Syndrome” by John Ferman – Recording available

Free Webinar: “Support Groups for Ehlers-Danlos Syndrome” by John Ferman – Recording available

Aug 17, 2015

Watch this video to learn about local EDS groups. Do you wish for in-person friendships with EDSers who 'get it'? Do you have the desire to form a local EDS group, but are not sure where to begin, or what is involved? Assuming there are too few

Physical Therapy Book Published – “Living Life to the Fullest with Ehlers-Danlos Syndrome”

Physical Therapy Book Published – “Living Life to the Fullest with Ehlers-Danlos Syndrome”

Aug 13, 2015

  Kevin Muldowney, MSPT has just published a book for people with Ehlers-Danlos Syndrome entitled, “Living Life to the Fullest with Ehlers-Danlos Syndrome.” This book outlines what a person with EDS needs to do in order to live a

Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

Aug 10, 2015

This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter,

EDS Awareness Shirts -– only $10 each!

EDS Awareness Shirts -– only $10 each!

Aug 9, 2015

Now available at www.bodysupportstore.com --- Zebra Shirts for awareness are only $10 each! This is the perfect way to communicate our EDS Awareness message during our awareness activities or the conference in

Join Effort by Sending a Birthday Card to Jasmine, Turning 14 with Ehlers-Danlos Syndrome

Join Effort by Sending a Birthday Card to Jasmine, Turning 14 with Ehlers-Danlos Syndrome

Aug 8, 2015

You can help this courageous EDS girl have “the best 14th Birthday ever” by sending her a Birthday card.  Include your encouragement, motivational songs, or positive story — to show her you understand the struggles of EDS.  Her

 

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    Upcoming Events

    • Free Webinar – “Physical Therapy for Sexual Dysfunction in EDS” by Jennifer Ortiz, MPT, WSC

      September 1, 2015
      Live Webinar at 7:30 pm EDT
      Jennifer Ortiz, MPT, WSC presents “Physical Therapy for Sexual Dysfunction in EDS”

    • Educational Session – “Support Groups for Ehlers-Danlos Syndrome”

      August 14 & 15, 2015
      EDNF Conference
      Baltimore, MD