Letter from the President/CEO: Annual Conference Update

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….

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Guidance on When and How to Resume Medical Care

female nurse holding a paper heart and smiling

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,…

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COVID-19 High Risk Patients and Ventilators

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…

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New Statement from our President and CEO, Michael Weamer (3/25/20)

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…

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Events Update

Picture of a calendar- VEDS Movement events postponed

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…

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New Statement from our President and CEO, Michael Weamer (3/17/20)

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,…

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New Statement Regarding COVID-19 and Genetic Aortic Conditions (3/16/20)

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…

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The VEDS Movement Statement: Upcoming Events

Picture of a calendar- VEDS Movement events postponed

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…

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New Statement Regarding COVID-19 and Genetic Aortic Conditions

Covid 19 red and white

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…

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