Archive for the ‘EDS Research’ Category

Dr. Tinkle Edits EDS Special Supplement for American Journal of Medical Genetics

Posted on March 18, 2017

Dr. Tinkle Edits Ehlers-Danlos Sydrome Special Supplement for American Journal of Medical Genetics.   Dr. Tinkle also served as an author / co-author for one-third of the papers in the supplement: The Ehlers-Danlos Syndromes: Reports from the International Consortium on the Ehlers-Danlos Syndromes PRZen / CHICAGO — Left Paw Press congratulates Dr. Brad T Tinkle […]

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High Tryptase Associated with Dysautonomia and POTS

Posted on October 18, 2016

Scientists at the National Institutes of Health have identified a genetic explanation for a syndrome characterized by multiple frustrating and difficult-to-treat symptoms, including dizziness and lightheadedness, skin flushing and itching, gastrointestinal complaints, chronic pain, and bone and joint problems. Some people who experience these diverse symptoms have elevated levels of tryptase — a protein in […]

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New Program for Vascular Ehlers-Danlos Syndrome

Posted on May 10, 2015

Vascular Ehlers-Danlos Syndrome is the most devastating type of EDS. It’s a disease so rare that only one out of every 250,000 people will be diagnosed with it. The DEFY Foundation was started by two students at West Chester University.

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Dr. Peter Byers Webinar on Vascular Ehlers-Danlos Syndrome – Video Recording

Posted on December 17, 2014

EDS Awareness invites you to watch this FREE webinar recording! Sponsored by   TOPIC:    “Vascular Ehlers-Danlos Syndrome / EDS type IV”  PRESENTER:   Dr. Peter Byers About our speaker:  Dr. Byers is Director of the Collagen Diagnostic Laboratory (CDL) at the University of Washington in Seattle, WA. He is also a Professor of Medicine and Pathology and Adjunct Professor of […]

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Take an Ehlers Danlos Survey about Your Experiences as an EDS Patient – Ends Nov. 10

Posted on October 30, 2014

Your input is needed for this very important EDS survey! Follow the link at the bottom of this article to take the survey by November 10th. My name is Linda Tao and I am currently studying at Harvard Business School (HBS).  I am conducting a research project on a “Multi-disciplinary approach to EDS,” a topic […]

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“EDS Awareness Educational Series” Webinar – Recording Available

Posted on August 12, 2014

  EDS Awareness invites you to listen to a FREE online learning session! On August 6, Dr. Derek Neilson’s presented EDS Hypermobility Type and what is needed to change the perception of this condition.       Sponsored by    WHAT:  ““EDS Awareness Educational Series” – a webinar program hosted by   PRESENTER:   Dr. Derek Neilson – Assistant  Professor […]

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Annabelle Inspires New National Charity in the UK

Posted on May 28, 2014

This 5 year old young lady is campaigning with her parents Sarah and Jared Griffin for EDS Awareness and Research funding. The UK has a new charity with a brave little girl from Bury at its heart. Five-year-old Annabelle ‘AJ’ Griffin suffers from Vascular Ehlers-Danlos Syndrome (VEDS), the most serious form of Ehlers-Danlos Syndrome (EDS). The […]

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