“Alone we are rare, together we are strong!”: Rare Disease Day Advocacy 2026
Director Loeys-Dietz and Marfan for the Marfan Foundation Stacey Watson shares her...
Author: The Marfan Foundation
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.
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...
A mom’s perspective on life in the Philippines with early-onset Marfan syndrome
Penelope shared her first-person story for Marfan Awareness Month. Hi! My name is...
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...
Remembering Raymond John Chevallier
With deep sadness, the Marfan Foundation announces the passing of Raymond Chevallier -...
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