Your Medical ID

picture of a medical alert bracelet

Do you have VEDS and struggle with what information to put on your medical ID or medical alert bracelet? You are not alone. Individuals with VEDS are at a high risk of life-threatening complications like arterial ruptures and dissections (including the aorta), organ ruptures (particularly the bowel and uterus), carotid-cavernous sinus fistula, and lung collapse. It may feel daunting…

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The vEDS Collaborative Clinical Trial Planning Survey

vEDS Collaborative and cooperating organizations

The VEDS Movement is a member of the vEDS Collaborative, a research group led by Sherene Shalhub, MD that has worked to bring together doctors, researchers, and individuals with Vascular Ehlers-Danlos Syndrome (VEDS). The vEDS Collaborative is currently enrolling individuals in a natural history study, and is planning a clinical trial to compare the effectiveness of medications currently used…

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The VEDS Movement is Published in an International Emergency Medicine Journal

Notebook glasses and pen

On August 25, 2019, the international Advanced Journal of Emergency Medicine (AJEM) published an article titled The Current Status of Genes and Genetic Testing in Emergency Medicine: A Narrative Review.   The article included a description of VEDS (Vascular Ehlers-Danlos Syndrome), as well as the importance of the genetic testing information to the emergency physician. We at The VEDS Movement…

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The VEDS Movement Launches TheVEDSMovement.org

Four young women sitting together smiling

The VEDS Movement is excited to announce the launch of its website for the VEDS community, TheVEDSMovement.org. “This is a huge step towards reducing the confusion between Vascular Ehlers-Danlos syndrome (VEDS) and other forms of Ehlers-Danlos Syndrome (EDS),” said Katie Wright, director of the Movement. “The website is also designed to provide the VEDS community with the most up-to-date…

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New Virtual Support Groups for VEDS

Woman in pink coat in front of the computer smiling

The VEDS Movement is pleased to announce four new virtual support groups for the VEDS community. This effort is spearheaded by Katie Wright, director of The Marfan Foundation’s new VEDS division. Each support group will meet once a month using online meeting technology. Those who are unable to join online can participate by phone. “We are very excited to…

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The Marfan Foundation Adds Vascular Ehlers-Danlos Syndrome Division

The Marfan Foundation, which saves lives and improves the quality of life for people with Marfan, Vascular Ehlers-Danlos (VEDS), Loeys Dietz, and other genetic aortic conditions, is expanding with a new division dedicated to programs and support services for VEDS. The Foundation has named Katelyn Wright, a highly regarded patient advocate in the VEDS community, director of the new…

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