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The Ehlers-Danlos Society
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Pain Management In Ehlers-Danlos Syndrome ~ Presentation by Pradeep Chopra, MD

Chronic, early onset, debilitating musculoskeletal pain is usually associated with hypermobile EDS (hEDS). Pain can be one of the most difficult symptoms for patients, and many in the community have found their pain being minimized by their doctors and not yet found a treatment balance that helps.

Dr. Chopra discusses different treatment options offered at pain clinics which could benefit some patients: http://bit.ly/28WLAKN
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Global Learning Conference 2016 early bird registration has been extended to June 7! http://bit.ly/EDSconference2016

Scholarship applications will be available later this week.

The general schedule is sessions starting on Thursday afternoon (with the Welcome Reception that evening), sessions all day on Friday including during the provided lunch, and Saturday (again with a lunch session) until mid-afternoon. As this year the conference is centered on presenting the new categorized diagnostic criteria and treatment guidelines, most are general sessions presented to everyone. There will be a separate Young Zebras program.
Rate Type, Early Bird, Early Bird, Regular, Regular. Member, Non-Member, Member, Non-Member. Full Conference (Age 18+), $345.00, $400.00, $430.00, $490.00. Friday One Day, $160.00, $190.00, $215.00, $245.00. Saturday One Day, $160.00, $190.00, $215.00, $245.00. Kid (Age 5-10), $230.00, $230.00 ...
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Bags are packed, travel underway or about to be. We converge on New York City tomorrow, and the symposium starts Tuesday morning. The future of EDS is on its way!
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"Adam's journey began a year and a half ago.

"'He was diagnosed with EDS, Ehlers Danlos Syndrome which is a genetic tissue disorder,' said Adam's dad, Tony. Adam is Classic Type. He was never diagnosed with EDS as a kid." 
At 15-years-old-and in the past few months-his life has been turned upside down. Adam Inzauro is recovering from heart surgery, being malnourished, and being diagnosed with a rare tissue disorder. He will fight it the rest of his life.
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In their circles
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‪#‎ZebraStrong‬
+The Ehlers-Danlos Society
Global Learning Conference 2016
July 14-16, 2016
Hilton Baltimore

Time is running out! Join us for the world’s largest gathering of Ehlers-Danlos Zebras!

This is our time to:

• Learn about the latest developments in research and care from the world’s top Ehlers-Danlos researchers and medical professionals
• Connect with other patients, caregivers, and allies
• Share your experiences—and learn how to build awareness
• Show your strength at our first annual rally to raise awareness at Baltimore’s Inner Harbor

Event Schedule: http://bit.ly/EDSschedule2016

Dynamic Kids & Teens Programs

Our conference offers safe space for young zebras 5-17 to meet others to share experience, friendship, and hope, as they learn how to become #ZebraStrong!

Register now!

Click here to book tickets for the conference
http://bit.ly/EDSconferenceTickets

To become a member and to take advantage of member registration rates, please click here: http://bit.ly/28KPOUV

“The Learning Conference is the one place I go where my disease isn’t invisible, and where everybody I talk to understands.”

Hotel Information & Reservations

The Ehlers-Danlos Society has secured a discounted room rate of $164.00 per night plus tax at the Hilton Baltimore. Discounted room rates are available until Thursday, June 23, 2016 or until the block is filled. Please call 1-888-243-9694 and request The Ehlers-Danlos Society Conference room block to ensure you receive the discounted rate.

#ehlersdanlos #ehlersdanlossyndrome #hypermobile #classical #vascular #vascularEDS #hEDS #hypermobility #hypermobilitysyndrome #zebrastrong
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Today is International Nurses Day and we are so grateful to the attentive nurses who care for and support those in hospital with Ehlers-Danlos syndrome.

Being aware of Ehlers-Danlos syndrome and the manifestations of each type, can ensure that patients are correctly monitored and treatment administered safely.

For more information on Nursing in Practice visit: http://bit.ly/1Opiq4k

#Nursing #InternationalNursesDay #EhlersDanlosSyndrome #hypermobility #hypermobile #vascular #vascularEDS #EDS
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Webinar!  The Ehlers-Danlos Society and Bauerfeind USA​ are pleased to announce a webinar, "Managing POTS with Compression Hose" presented by Erin Grigsby on Monday, May 9, from 8-9 pm EDT. To register, please visit https://attendee.gotowebinar.com/register/6174261740391328001

This webinar is tailored for patients and family members interested in learning more about EDS, but all are welcome.
By clicking this button, you submit your information to the webinar organizer, who will use it to communicate with you regarding this event and their other services. Close Your information will be submitted to the webinar organizer, who will use it to communicate with you regarding this event ...
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People
In their circles
64 people
Have them in circles
344 people
Claire Hamilton Russell's profile photo
simora simora's profile photo
Alice Flora's profile photo
Bex Adams (BexMarksTheSpot)'s profile photo
Kitty Qats's profile photo
kay sawyer's profile photo
The Asseff Foundation's profile photo
Eric Bernstein's profile photo
EURORDIS's profile photo
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Resources for those affected by Ehlers-Danlos syndrome
Introduction
Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder Ehlers-Danlos syndrome. Any medical information found here should be discussed with your doctors thoroughly before taking action. Established in 1985 by Founder Nancy Hanna Rogowski (1957 - 1995), we are a 501 (c) (3) Nonprofit Organization with thousands of members across America and around the world. Our volunteers and their families are the life blood of EDNF and make a huge difference to those affected by EDS.
Contact Information
Contact info
Phone
703-506-2892
Fax
703-506-3266
Address
7918 Jones Branch Drive Suite 300 McLean VA 2210