Archive for the ‘Support Groups’ Category

Sarasota Teen Wants Support Group for Ehlers-Danlos syndrome

Posted on July 15, 2016

Email Alix at aredmonde@mysuncoast.com     SARASOTA, Fla. – A serious diagnosis of a rare disorder is challenging enough for the hardiest adult, but one young woman with Ehlers-Danlos syndrome (EDS) is stepping up to raise awareness, and be her own health advocate. Ehlers-Danlos syndrome is a genetic mutation of the connective tissue that causes […]

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Join the New England/MA Ehlers-Danlos Initiatives Facebook Group

Posted on February 22, 2016

The EDS New England/Massachusetts Support Group, members of the EDS Awareness support group network, have created a new Facebook Group and released a new survey.  Results from both the New England survey and the EDS Awareness survey survey will be included in upcoming reports. Thank you for your participation in these important projects, EDS Awareness […]

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

Posted on August 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 EDSers in your small city?
You might be surprised!

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Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

Posted on August 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, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]

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EDS & Chiari “Unite@Night” Walks in Ohio

Posted on May 31, 2015

The May 30th Ehlers-Danlos / Chiari walk in Cincinnati, OH had an over whelming response! In addition to our group members, the walk attracted more than 75 new EDSers and families! Please join us in June for several walks throughout the country!

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
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