Connor Metz Legacy Drives University of San Francisco Loeys-Dietz Syndrome Training for 1,500 Nursing Students
13-year-old Connor Metz tragically lost his life due to aortic dissection resulting from...
News from
The Marfan Foundation
I’m a Thriver: Chuck Dodds Reflects on 20 Years Living with Loeys-Dietz Syndrome After an Aortic Dissection
“I felt like Mike Tyson punched me in the chest. That’s the best way I can describe it,”...
New Book “Making Rent” Aims in Part to Raise Awareness of Marfan Syndrome
Broadway pioneer, musical director of Rent, author of new book, Making Rent, and friend of...
Canadian and U.S. Loeys-Dietz Syndrome Organizations Team Up to Help People Living with Rare Condition Find Community
First-ever joint virtual event to share personal perspectives Montreal, Quebec | Port...
Hello, My Name is Jeanette: “A family diagnosis is a warning and an opportunity to save lives.”
Jeanette shares her first-person experiences in this post. Please note: this story discusses loss...
More than 700 People Take Part in 2026 South Florida Walk for Victory
A bundled-up crowd took part in the South Florida Walk for Victory on Sunday, 2/1 at T.Y. Park in...
The Marfan Foundation Named a Top Place to Work in Communications
For the first time in its history, the Marfan Foundation has been named a Top Place to Work in...
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