The Marfan Foundation and The VEDS Movement are here for you today and the better days ahead! We are fully operational and welcome your ideas on how we can even better serve our community. As you know, we have delayed the launch of our Annual Conference website. Most likely, we will make a final decision regarding Annual Conference around May 1…
In response to the current pandemic, The VEDS Movement is postponing several in-person events scheduled this Spring. This is disappointing to us because we know how valuable it is for you to connect with community and learn from the experts. The Movement, however, is poised to continue to serve you in our new virtual world. We are expanding our online…
As the current health situation with the coronavirus evolves, I want to keep you posted on the Foundation’s actions. Since my statement last week, we appointed a COVID-19 Task Force which met yesterday to review the impact coronavirus is having on our community and organization. The members are Cory Eaves (Chair), Dr. Alan Braverman, Caryn Kauffman, Bert Medina, Scott Avitabile,…
The Marfan Foundation, 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 Marfan, VEDS, and LDS…
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…
