Archive for the ‘advocate’ Category
Posted on January 22, 2016
Published by Ziggy’s Wish Lara Bloom: Every cause needs awareness. Sometimes communities forget that the cause is represented by many different faces, experiences and stories and, when awareness of the condition or issue they are living with is not represented in the way that they can relate to, they can react negatively. I experience this […]
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 2, 2015
By: Clair Morton. – Libby Nash, a physiotherapist in Australia, has been nominated by her patient for an award. She is dedicated to helping teen Lily Warren strengthen her joints affected by Ehlers-Danlos Syndrome. GRAFTON physiotherapist Libby Nash has gone above and beyond to improve the life of teenager Lily Warren, who lives with a rare and debilitating […]
Posted on October 1, 2015
Canadians with EDS have not been receiving the treatment they need. Families who have traveled to the U.S. for EDS treatment are seeking reimbursement from the Ontario Health Insurance Plan. Watch the video press conference and interviews with the affected EDS families.
Posted on August 1, 2015
“Our Stories of Strength – Living with Ehlers-Danlos Syndrome”, edited by Kendra Neilsen Myles, is an inspirational collection of stories written by those affected by different types of Ehlers-Danlos Syndromes
Posted on July 29, 2015
By Jonathan Rodis.
Edited by Sue Hagen.
Being your own advocate not only improves the quality of your care in the future, but also provides your local caregivers, physicians and hospital staff a better understanding.
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