Archive for the ‘Awareness’ Category
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 […]
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 […]
Posted on February 22, 2016
“Issues with my Tissues” follows the epic emotional journey of Lara Bloom, and Ehlers-Danlos Syndrome. We appreciate your Facebook Shares. Likes and comments
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 […]
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, […]
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, […]
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 […]
Posted on October 2, 2015
This is an encouraging story about a task force being created in Connecticut to address the issues for those with rare diseases like EDS.