Articles

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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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Denver Ehlers-Danlos Syndromes and Associated Conditions Conference

Posted on January 24, 2018

Mark your calendar for the March 2-3, 2018 Ehlers-Danlos Syndromes & Associated Conditions” Conference in Denver. Friday, March 2, 2018 is the Continuing Medical Education (CME) for healthcare providers only and Saturday, March 3, 2018 is for patients and family members.  Both days have similar agendas. Please invite all your healthcare providers to attend and […]

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Airport Staff Told me I “Don’t Look Ill Enough” to be Disabled and Would Not Help Me!

Posted on January 7, 2018

Nathalie says because her illnesses are “invisible” people often doubt whether she really is disabled! Ehlers-Danlos Syndrome is a major disability for so many. A disabled woman says she was refused help boarding a flight because she “doesn’t look ill”. Nathalie Allport-Grantham, claims a member of staff at Stansted Airport told her she was “wasting […]

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New Ehlers-Danlos Syndrome Survey

Posted on November 17, 2017

Hello! My name is Katie Bealka, and I am a graduate student in the Brandeis University Genetic Counseling Master’s degree program. I am looking to better what life is like for emerging adults living with Ehlers Danlos Syndrome (EDS), either the classical or hypermobile type, and need your help. Have you been diagnosed with either […]

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