Archive for the ‘Awareness’ Category
Posted on April 12, 2015
NPR radio ran a segment on invisible disabilities to commemorate the 25th anniversary of the Americans with Disabilities Act (ADA). While progress has been made, much still needs to be done. Click here for the original broadcast on NPR radio. Join the efforts to spread awareness of ADA on its July 26th anniversary. Resources include this Tool Kit, a project of the ADA […]
Posted on March 30, 2015
The pressures from the school environment are difficult enough when a student is well. EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers. By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]
Posted on March 24, 2015
15-year-old Mya Lilly has multiple dislocations each day caused by Ehlers-Danlos syndrome. When asked if anything on her wish-list was unrelated to medicine or her health, she found it hard to think of one. She wishes for a wheelchair-friendly car and home. She is thankful to return to school and hopes to study medicine after graduating. She is passionate about EDS Awareness. By SARAH […]
Posted on March 20, 2015
Ehlers-Danlos Syndrome makes it difficult for Kristina to accomplish daily living tasks. But, she has been refused disability benefits in Australia on the basis that her condition is ‘curable’. She has trouble driving to her doctor appointments without pain and dislocation. She wants to spread awareness by sharing how EDS affects her daily life. By: Margaret Burin (ABC […]
Posted on February 27, 2015
This Saturday (2/28) Ehlers-Danlos Syndrome Canada will commemorate Rare Disease Day with the lighting of the CN Tower in blue at sundown. EDS is considered to be a rare disease; but experts say it is more prevalent than once thought – because it’s rarely diagnosed! To learn more about prevalence, watch Dr. Neilson’s video here. By Lisa Rainford of Bloor […]
Posted on February 25, 2015
Rare Disease Month brings out the images of those who are struggling with the challenges of Ehlers-Danlos Syndrome and other debilitating disorders. “Beyond the Diagnosis” is an art exhibit that features a piece depicting an EDSer and her caregiver. By Jacyln Torres Contributing Writer “Beyond the Diagnosis,” hosted for Rare Disease Month, aims to humanize portrayed […]
Posted on February 22, 2015
The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015! February 23-27 is Rare Disease Week on Capitol Hill. Please join the efforts to raise awareness for EDS!
Posted on February 15, 2015
“On February 13, The Ohio State University Women’s Ice Hockey Team held an Ehlers Danlos Syndrome Awareness Night to support their teammate Erin Selfe (10), her family and the EDS Community during Rare Disease Month. Erin became a member of the Ohio State Team through Team IMPACT, a […]
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