Archive for the ‘Support Groups’ Category
Posted on May 18, 2019
We are delighted to have completed our first successful EDS Leadership event on May 17, 2019 in Mason, Ohio The conference was free, and we had over 300 life and “live stream” registered attendees from: US, AU, BE, Columbia, CA, UK, MX, Neatherlands, … Videos of the conference presentations will be posted on Leadeds.com soon. […]
Posted on April 3, 2018
Tri-state EDS support group members were interviewed to discuss EDS Awareness Month Ashton Nesmith-Kochera is with Victoria Graham and 8 others By: Jonathan Hunter Updated: May 17, 2018 11:18 PM EDT Click here for the link to the video of this interview MARTINSBURG, W.Va. – The month of May is Ehlers-Danlos Syndrome Awareness month. EDS is an inherited condition that affects […]
Posted on June 11, 2017
Tiffany Early discusses being an advocate for Ehlers-Danlos Syndromes.
Posted on March 6, 2017
Rare disease day
Posted on July 15, 2016
Email Alix at firstname.lastname@example.org 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 […]
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 […]
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!
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 […]