Community

Colorado EDS Awareness Month Proclamation

Colorado EDS Awareness Month Proclamation.   Justin and Nancy, leaders of the Denver EDS Support Group, received their Proclamation.   There is still time to get your Ehlers-Danlos Awareness Month Proclamation request sent to your state or local officials. . . Proclamation sample. http://www.ehlersdanlosnetwork.org/May.html  . . Proclamation Contact information Click here for a spreadsheet with contact information […]

Alaska Ehlers-Danlos Syndrome Awareness Month Coloring Competition.

Alaska Ehlers-Danlos Syndrome Awareness Month Coloring Competition.    Start Date: May 1, 2016 at 12:00 am End Date: May 31, 2016 at 11:59 pm Rules: Attached you will find a picture of a zebra bust that was designed and drawn by the artist Katie Zamudio, Doodlebug Coloring Books. Starting May 1, 2016 at 12:00 am […]

May is Ehlers-Danlos Syndrome Awareness Month

This month is Ehlers-Danlos syndrome awareness month. It’s a connective tissue disorder with no cure. Dr. Rob is “in the house” to give us details on how we can help those suffering from this often-painful condition. Andrea Julian, a leader of the Dayton Ohio EDS Support Group is interviewed. Click here for the Dayton, Ohio EDS […]

Free Webinar: “Chronic Pain in Hypermobile Children” – Recording Available

Dr. Neil Schechter presented “Chronic Pain in Children and Adolescents with EDS”.

More Summer Camps for Children with Ehlers-Danlos Syndrome

The Hole in the Wall Gang will be hosting a Rare Disease Summer Family Camp June 2-5 at Hole in the Wall.  Children with Ehler’s Danlos and their families will be eligible for this session.  In addition we also will host a General Family Weekend in the spring and in the fall (4/22-24 and 10/21-23) that […]

“Issues with my Tissues” – The Lara Bloom Story

“Issues with my Tissues” follows the epic emotional journey of Lara Bloom, and Ehlers-Danlos Syndrome. We appreciate your Facebook Shares. Likes and comments

Ehlers-Danlos Hoofbeat Run Walk-N-Roll – August 6, 2016

  Ehlers-Danlos Hoofbeat Run Walk-N-Roll will include a 1 mile run/walk/roll, a 5K run/walk and a ½ marathon run happening on August 6, 2016 in King Ferry, NY.  . . This is a noncompetitive Run/Walk/Roll event that serves to raise donations and awareness for Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. All proceeds will […]

The Reality of Ehlers-Danlos Syndrome

After 22 years looking for answers, Kara LaFache has finally been diagnosed with Ehlers-Danlos Syndrome. Watch this video TV news report, which brings awareness to the multi-systemic and disabling aspects of EDS. Spread awareness yourself with these EDS Awareness materials! By Skyler Srivastava – WKTV.com UTICA, NY – Characterized by a lack of awareness and mis-diagnosis, […]