Archive for the ‘EDNF Conference’ Category

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EDS Society Global Conference Summary – Jon Rodis

Posted on September 10, 2017

Jonathan Rodis Founder and Co-leader-Ehlers-Danlos New England/Massachusetts Support Group President-Massachusetts Chapter of The Marfan Foundation Chair-Physician Awareness Committee(s) for Marfan and Ehlers-Danlos Syndrome(s) National Disability and Medical Advocate for Rare Disorders Member: Winthrop Disability Commission EDS Society Global Learning Conference in Las Vegas Recap   As I promised, here is my recap of the EDS […]

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#ZebraStrong! The Ehlers-Danlos Society Zebra Rally in Baltimore’s Inner Harbor

Posted on July 18, 2016

The Ehlers-Danlos Society hosted the  #ZebraStrong, a rally in Baltimore’s Inner Harbor on Saturday, July 16, 2016 to build awareness for Ehlers-Danlos syndrome, an often painful and disabling, yet highly under-diagnosed and misdiagnosed genetic disorder. The rally was held immediately following the Society’s Global Learning Conference which was held at the Hilton Baltimore July 14-16. Over 500 attendees […]

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Free Webinar: “Support Groups for Ehlers-Danlos Syndrome” by John Ferman – Recording available

Posted on August 17, 2015

Watch this video to learn about local EDS groups.
Do you wish for in-person friendships with EDSers who ‘get it’?
Do you have the desire to form a local EDS group, but are not sure where to begin, or what is involved?
Assuming there are too few EDSers in your small city?
You might be surprised!

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The Smiths have Worked Year-Round to Spread the Word about Ehlers-Danlos Syndrome

Posted on April 25, 2015

Ellen and Stuart Smith have been very active in the Rhode Island EDS Awareness and Support Group. They are educating and supporting those with this condition and their caregivers. By MELANIE THIBEAULT, Valley Breeze Staff Writer. SCITUATE – Most of 65-year-old Ellen Lenox Smith’s day is spent managing a painful connective tissue disorder called Ehlers-Danlos syndrome, […]

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Dr. Jan Dommerholt Webinar on “Physical Therapy for Ehlers-Danlos” – Video Recording

Posted on January 23, 2015

 EDS Awareness invites you to watch this FREE webinar recording!   Sponsored by www.bodysupportstore.com   TOPIC:    “Physical Therapy for Ehlers-Danlos”   PRESENTER:   Dr. Jan Dommerholt   About our speaker: Jan Dommerholt, DPT Jan is a recognized expert in the physical therapy diagnosis and treatment of persons with chronic pain syndromes, including EDS. He has lectured at EDNF patient […]

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New Strategic Marketing Resource for Ehlers Danlos National Foundation

Posted on September 12, 2014

We are pleased to announce: Jane Mitakides has been appointed to the Ehlers-Danlos National Foundation (EDNF) board of directors. Her husband, Dr. John Mitakides, is one of our Educational Webinar speakers and a well-known EDS / TMJ expert. Jane has a background in strategic marketing and communications, and will be a valuable asset to the EDNF. She […]

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