This news item appears on The Marfan Foundation website and has been copied here for the VEDS community. The VEDS Movement is a division of the Foundation. As you might imagine, this is a very fluid time for the Foundation. Changes are literally happening hour by hour and we are doing our best to stay on top of the situation,…
The VEDS Movement, a division of The Marfan Foundation, is working closely with our Professional Advisory Board, which consists of the leading medical experts on VEDS, Marfan and related conditions, on issues surrounding COVID-19 (coronavirus). In response to the recent spread and risks associated with coronavirus, the Foundation is postponing several in-person events scheduled in the coming weeks. We…
The Marfan Foundation and The VEDS Movement, in collaboration with our Professional Advisory Board (PAB), continues to monitor the news regarding COVID-19 and wants to provide updated information for our community. We would like to reaffirm the recommendations issued by the Centers for Disease Control and Prevention (CDC) regarding the virus and want to add specific information for the…
With the anticipated spread of the novel coronavirus, COVID 19, in the United States, The VEDS Movement, in collaboration with members of our Professional Advisory Board, would like to echo some of the Center for Disease Control (CDC) guidance regarding the virus for the Vascular Ehlers-Danlos Syndrome (VEDS) community. We are monitoring the risks associated with COVID 19 and,…
A new research paper, titled Targetable cellular signaling events mediate vascular pathology in vascular Ehlers-Danlos syndrome was published electronically on December 17, 2019 in the Journal of Clinical Investigation. In this research study, researchers from Johns Hopkins University School of Medicine created two mouse models of VEDS (with similar glycine substitutions to those found in individuals with VEDS), and…
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…
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…
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…
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…
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…
