The VEDS Movement is excited to unveil its new logo to the community as it continues to make great strides for everyone impacted by VEDS. According to Katie Wright, director of The VEDS Movement, it is important to highlight the V as it distinguishes the vascular type of Ehlers-Danlos syndrome from the others. This is a critical distinction because…
All of us at The Marfan Foundation and The VEDS Movement have been holding out hope that we would be together this summer for our Boston Annual Conference. We know how valuable it is to our community — for the access to leading doctors and researchers, for the networking opportunities with others, and for the children and teen programming….
The VEDS Movement, in collaboration with our Professional Advisory Board, continues to monitor the news regarding COVID-19 and wants to provide updated information for our community. Recently, the Centers for Medicare & Medicaid Services (CMS) outlined guidance about resuming in-person medical care. We want to pass on some of that guidance to our community about resuming in-person care because,…
Why are people with underlying diseases, especially lung and heart disease, at high risk? People with Marfan, VEDS, Loeys-Dietz and related conditions are not automatically at higher risk for severe complications with COVID-19 simply based on their diagnosis. However, some patients may be at a higher risk if they also have one of the lung, heart, or other conditions…
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…
