Tag Archive: research

Aiming at making a difference

My name is Isabella and I just turned 22 at the end of May, which is the awareness month for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) back in 2014 and last summer I got the confirmation of my diagnosis based on the new evaluation criteria […]
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Assistance dog Bailey

Bailey’s story from puppy to lifesaver

Bailey’s story from puppy to lifesaver. For 10 years I battled with life-crippling symptoms and dealt with so many dismissive doctors that I truly had started to give up. I had to go to a doctor purely by chance due to a chest infection that couldn’t shift and I reluctantly went to a new doctor. […]
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I had my lightbulb moment at 50 years old

I am 80 years old. I was diagnosed with hypermobile EDS at age 50. I participated in an Arthritis Newsgroup (this was years before social media), and a Norwegian girl reported that she had just been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). She listed her symptoms and the lightbulb moment happened. She was talking about […]
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February 2020 HEDGE Study Update

The Ehlers-Danlos Society would like to give special thanks to members of our community who took part in the Hypermobile Ehlers-Danlos Genetic Evaluation (HEDGE) Study screenings in Watford, UK, and Ghent, Belgium in February! As we search for the genetic cause or causes of hypermobile EDS (hEDS) we have now enrolled 413 participants into the […]
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The Ehlers-Danlos Society 2020 Research Grant Program

The Ehlers-Danlos Society is pleased to share with you our Research Grant program for 2020. We will announce each grant round over the course of the year but have summarised below the opening dates for your information. Further details will be provided with the online application process with each respective round.  We aspire to offer […]
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Ask The Society: Webinar January 12, 2020

Join The Ehlers-Danlos Society at 12 noon EST on January 12, 2020, for “Ask The Society”, a webinar with Board of Directors Chair, Susan Hawkins; President and CEO, Lara Bloom; Chair of the Medical Board, Dr. Clair Francomano; Chief Medical Officer, Dr. Alan Hakim; and Chief Scientific Officer, Professor Fransiska Malfait.  We want to really […]
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The Ehlers-Danlos Society Receives $1 Million Gift To Advance Research

NYC, USA — The Ehlers-Danlos Society is delighted to announce an anonymous gift of $1 million US dollars to advance research within the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and associated symptoms and conditions.  This generous donation sets the foundation for vital research, and has enabled The Ehlers-Danlos Society, in conjunction with The EDS […]
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HEDGE Study Update

Last week the Hypermobile EDS Genetic Research Network met at the Annual Society of Human Genetics conference. A truly collaborative and international group, the HEDGE network, consisting of leading authorities in human genetic research, lead the innovative HEDGE (Hypermobile Ehlers-Danlos Genetic Evaluation) research study.  By bringing together these medical experts and through building the HEDGE […]
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