News

The Marfan Foundation Announces First-Ever E3 International Summit: Educating, Empowering, and Enriching Our Community

Three-Week Online Program Provides Never-Before Virtual Access to Leading Medical Experts from All Over the World For the first time in its nearly 40-year history, The Marfan Foundation is offering its community an incredible three-week program featuring medical experts from all over the world on an array of topics related to the diagnosis and treatment of Marfan syndrome, Loeys-Dietz…

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VEDS vs. EDS: Why it Matters

It’s Ehlers-Danlos Syndrome (EDS) awareness month! We want to take this opportunity to share crucial differences between the most common form of EDS and Vascular Ehlers-Danlos Syndrome (VEDS). EDS is a connective tissue condition that is frequently characterized in the media by “loose joints and soft, stretchy skin.” Articles about celebrities who reveal they have EDS do not usually…

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The VEDS Movement Has a New Look!

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…

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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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