Driving for DEFY Golf Tournament
2026 marks the 12th anniversary of the Driving for DEFY golf outing! Together, we have raised over...
Tag: The Marfan Foundation
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...
Simposio virtuale sulle sindromi di Marfan, Loeys-Dietz, VEDS e Stickler
Invitiamo i pazienti e le loro famiglie a partecipare a un simposio virtuale con presentazioni, in...
Honoring Lucas: A Family’s Mission to Raise Loeys-Dietz Syndrome Awareness
Note: This story discusses loss of a young person’s life due to a genetic aortic...
The Northern Illinois Chapter’s Annual Chocolate Fundraiser
February is Marfan Awareness Month! Let's come together for our Chili and Chocolate Social...
Walk For Victory – Michigan
Join the Walk for Victory movement! Together, we celebrate community! Meet and reconnect...
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