Author Archive

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Hypermobility Happy Hour Podcast with Dr. Linda Bluestein

Posted on July 27, 2019

A doctor and a lawyer walk into a podcast….   Meet Dr. Linda Bluestein and attorney Kerry Gabrielson, two professional women who managed to successfully complete many years of education despite having a painful genetic condition affecting their connective tissue that would need lifelong management.   Listen along to their podcast as they tackle the […]

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September 7 Kansas City Ehlers-Danlos Syndromes and Associated Conditions Seminar

Posted on June 8, 2019

Topics To Be Covered: Genetics, Cardiology, Gastroenterology, Dysautonomia, Mast Cell Activation Syndrome, Physical Therapy,  Occult Tethered Cord, Chronic Pain Management and Connecting the Dotsbetween Medical Complexities Provided By: EDSKC Collaboration Inc. in partnership withclinicians from Children’s Mercy Kansas City andthe University of Kansas Medical Center CLICK here for Program Brochure CLICK here for Physician Seminar […]

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2019 EDS Leadership Conference

Posted on May 18, 2019

We are delighted to have completed our first successful EDS Leadership event on May 17, 2019 in Mason, Ohio The conference was free, and we had over 300 life and “live stream” registered attendees from: US, AU, BE, Columbia, CA, UK, MX, Neatherlands, … Videos of the conference presentations will be posted on Leadeds.com soon. […]

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New Ehlers-Danlos Syndromes Physician CME Education Program

Posted on March 29, 2019

Introduced at the EDS Conference in Las Vegas About this program. We have had over 1200 participants since we introduced the program!  The Ehlers-Danlos Syndromes Physician CME Education Program is the first online Ehlers-Danlos Syndromes course accredited to provide continuing education credits. This free program will cover the fundamental principles for the diagnosis, classification, and […]

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An EDS Research Database for our German Doctors

Posted on October 18, 2018

To: John Ferman – President  Chronic Pain Partners Thank you for the amazing work you are doing. It is exciting to hear about the great success of the EDS Physician CME program and the planned CEU program! We are creating a research database for our German doctors with publications and information on Ehlers-Danlos syndromes. Only […]

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May EDS Proclamation in R.I.

Posted on April 4, 2018

The Rhode Island EDS Support Group received their EDS Awareness Month Proclamation. Here are the party pictures, Our Proclamation Our Zebra inspired Art winner Bess Karner’s winning piece Dress like a Zebra winner Paula Taylor with handmade Zebra Mask The RI EDS/CTD Support Group showing off their stripes for May Awareness      

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Ehlers-Danlos Society Receives $1 Million Gift for Hypermobile Ehlers-Danlos syndrome (hEDS) Research

Posted on February 13, 2018

EXCITING ANNOUNCEMENT! An anonymous donor has presented us with a $1 million gift to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), a rare, degenerative, and all-too-often disabling connective tissue disorder.   This is the single largest gift in the 33-year history of the Ehlers-Danlos Society, and the largest individual gift in […]

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Ehlers-Danlos Syndrome & Hypermobility Spectrum Patient Symposium – NYIT Recording

Posted on February 1, 2018

  Ehlers-Danlos Syndrome & Hypermobility Spectrum Patient Symposium  Click here for the  recording link    Note: this is a 6 hour program that you may want to listen to in segments NOTE: Times for each segment are listed below.  These are not listed on the video page. The Symposium schedule is as follows: TOPICS INCLUDE: • Welcome […]

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