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...
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.
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 -...
After Years of Medical Mysteries, Genetic Test Turns Up Marfan Syndrome – and a Life-Changing Surprise
Summer McKesson's compelling story recently put Marfan in the news with multiple national...
Team Victory Makes Strides at Berlin and New York City Marathons
Shining a Global Spotlight on Marfan, Loeys-Dietz, Vascular Ehlers-Danlos, and Stickler...
Have a question? We can help.
Contact our Help & Resource Center by
submitting a question via the link below.
