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Wiley Donates Free Access to Groundbreaking Rare Disease Research Papers in Partnership with the Ehlers-Danlos Society

BALTIMORE, MD January 30, 2018 — In honor of The 2018 Ehlers-Danlos Syndromes Global Symposium, John Wiley & Sons, Inc. (NYSE: JW.A and JW.B), has donated free access to its groundbreaking compendium of peer-reviewed research papers, “The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes,” a Special Issue of the American Journal of […]
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No More Monkey Bars: A 13-Year-Old’s EDS Story

Written by 13-year-old Isabella ‘Kitty’ Yim. Originally featured on folks.pillpack.com on January 30, 2018 Finding out something about yourself that you did not know before is terrifying. Especially if it is a disease. One that you can not get rid of and have to live with for the rest of your life. The hardest thing […]
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Life in Pain: Luke Murphy profiled in new video from Fixers

Originally posted by Fixers.org.uk on January 23, 2018 A young North Lanarkshire man is speaking out about a rare genetic condition that causes him significant pain on a daily basis. Luke Murphy, 22, was diagnosed with a connective tissue disorder called Ehlers-Danlos Syndrome (EDS) in February 2016. With Fixers, he has made a film to […]
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Invisible No More: Ehlers-Danlos Society Photographs “The Faces of EDS/HSD”

As part of its ongoing effort to show the true faces of the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), The Ehlers-Danlos Society completed a four-day, five-location photo shoot in Maryland and New York, featuring over two dozen people living with EDS and HSD, including sessions with several patients of Dr. Clair Francomano, vice […]
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Family loses third child to Vascular Ehlers-Danlos

Originally posted by BBC News on January 14, 2018 A couple have said they are “heartbroken” after losing a third child to vascular Ehlers-Danlos. Carrick Prentice-Underwood, 19, from Redditch, died on Thursday, 11 of January. It follows the death of his sister Charlotte, 16, in 2010 and 17-year-old brother Craig in 2013. Parents Robert and […]
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Jordan Chapmond

Jordan was a fighter and smiled every day even when in pain. She had the vascular form with some mobility issues. We lost her to a massive heart attack August 15, 2011.
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