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

  • Join us for FREE Webinars 2x/month! Watch this presentation by Dr. Anne Maitland focused on Allergies & Mast Cell Activation Syndrome in EDS Patients.

  • 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. Pradeep Chopra: EDS Pain Management (Part 2)

  • FREE Live Webinars offered 2x/month! Watch this presentation by Dr. John Mitakides: TMJ and Cervico-cranial Instability (CCI) in EDS

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

  • An aspiring gymnast learns she has Ehlers-Danlos. Not able to compete, her new dream becomes EDS Awareness via the "Life as a Zebra" organization. This is the story of Katie Dama Jaskolski:

  • 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
Jessica Participates in the first “Conquer Chiari Walk Across America”

Jessica Participates in the first “Conquer Chiari Walk Across America”

Sep 19, 2014

Jessica Paddack has endured many surgeries throughout her 15 year battle with Chiari malformation. One of her Chiari surgeries led to the discovery of her Ehlers-Danlos Syndrome. The “Conquer Chiari Walk Across America” is this

EDS Awareness Educational Series – Recording Available

EDS Awareness Educational Series – Recording Available

Sep 17, 2014

Listen to this FREE online learning session about EDS & Psychiatric illness misdiagnoses by Dr. Richard Barnum, Psychiatrist. How can families handle situations where they feel misunderstood by their healthcare providers? Unfortunately, many

EDS Awareness Educational Series – October 1, 2014

EDS Awareness Educational Series – October 1, 2014

Sep 15, 2014

    Join us for a FREE online learning session!  Kathleen Kane, ESQ speaks about the Social Security Disability application process, and factors that EDSers should consider when filing for disability.   Sponsored

“Pain Awareness Month” to raise awareness of the U.S. Pain Foundation

“Pain Awareness Month” to raise awareness of the U.S. Pain Foundation

Sep 14, 2014

September is “Pain Awareness Month” in Scituate, RI and several other U.S. towns. Advocates are raising awareness of  chronic pain conditions and the U.S. Pain Foundation.  Stuart and Ellen Lenox Smith have been very active with

New Strategic Marketing Resource for Ehlers Danlos National Foundation

New Strategic Marketing Resource for Ehlers Danlos National Foundation

Sep 12, 2014

We are pleased to announce: Jane Mitakides has been appointed to the Ehlers-Danlos National Foundation (EDNF) board of directors. Her husband, Dr. John Mitakides, is one of our Educational Webinar speakers and a well-known EDS / TMJ expert. Jane

Tennis Coach Gives Hope to Teen with Ehlers Danlos Syndrome

Tennis Coach Gives Hope to Teen with Ehlers Danlos Syndrome

Sep 6, 2014

Megan has a new motivation to stay active despite Ehlers Danlos Syndrome. Her high-school tennis coach has paved the way for her to participate in modified varsity competition! Her strength and dedication has inspired her coach and peers. Megan

Ehlers Danlos Syndrome Featured in TV News Story – Watch Video

Ehlers Danlos Syndrome Featured in TV News Story – Watch Video

Sep 5, 2014

Megan is a talented artist with Hypermobile EDS. Watch her video story featured on a Philadelphia TV news station.  This is a good example of how patients can spread awareness of Ehlers Danlos Syndrome in their local communities. Watch the video

EDS Awareness Educational Series – Recording Available

EDS Awareness Educational Series – Recording Available

Sep 3, 2014

  EDS Awareness invites you to watch this FREE online learning session! On September 3, Dr. Anne Maitland’s presentation focused on Allergies & Mast Cell Activation Syndrome in EDS Patients.   Sponsored

 

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    Upcoming Events

    • “Pain Awareness Month” to raise awareness of the U.S. Pain Foundation

      Sept. 27, 2014
      “Pain Awareness Event” at Miriam Hospital in Providence, RI

    • EDS Awareness Educational Series – October 1, 2014

      7:30pm, Eastern Time
      Kathleen Kane, ESQ
      “Applying for Disability”

    • Abilities Expo is a CELEBRATION of what you CAN DO

      November 21 – 23, 2014 in the Bay Area
      Abilities Expo is a CELEBRATION of what you CAN DO