Archive for the ‘Awareness’ Category

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Colorado EDS Awareness Month Proclamation

Posted on April 10, 2016

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 […]

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Alaska Ehlers-Danlos Syndrome Awareness Month Coloring Competition.

Posted on April 10, 2016

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 […]

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

Posted on January 2, 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 […]

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The Reality of Ehlers-Danlos Syndrome

Posted on December 1, 2015

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, […]

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22-year-old with Ehlers-Danlos Syndrome Receives MBE

Posted on November 23, 2015

by Seema Hakim. Lucy Watts is given special recognition for her social media work to promote EDS awareness. A young woman battling a life-limiting illness was made an MBE (Member of the Most Excellent Order of the British Empire) for her tireless work in educating others about the condition. Lucy Watts, of Swans Green Close, Benfleet, […]

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Canada’s Treatment of Ehlers-Danlos Syndrome Calls for Change

Posted on November 2, 2015

Canadians with Ehlers-Danlos Syndrome are desperate for treatment and continue to advocate change in their health care system. MPP Michael Harris is calling for an all-party committee to form a comprehensive strategy on rare diseases. Patients like the Smith siblings are skeptical, but remain hopeful and thankful for community fundraising. By Darcy Cheek, Recorder and Times.   You won’t find […]

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