Best Practices for Preclinical Thoracic Aortopathy Studies
Join the Genetic Aortic Network on April 21 at 11:00 a.m. ET for a webinar on highlights from...
Author: Dominga Noe
Dominga Noe was diagnosed with Marfan syndrome when she was nine years old. After graduating from Wagner College with a BS in Arts Administration, began working for The Marfan Foundation in 2016 as the first staff member with Marfan. Now she lives and works from Kansas City, MO as the Foundation's Technical Content Manager, Teen Group Leader, and Teen Council Chair.
Empowered Pain Relief Course
The Marfan Foundation is pleased to offer Empowered Relief®️, a free 2.5-hour pain management...
Camp Victory Information Session
Join us to learn more about our Camp Victory programs in Georgia and California. Camp Victory for...
Driving for DEFY Golf Tournament
2026 marks the 12th anniversary of the Driving for DEFY golf outing! Together, we have raised over...
Variants of Uncertain Significance: What a VUS Result Means for You and Your Family
A variant of uncertain significance (VUS) is a common genetic test result, but one that often...
People’s Perspectives: Living with Loeys-Dietz Syndrome
For the first time, the Loeys-Dietz Syndrome Foundation Canada and the Loeys-Dietz Syndrome...
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...
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