Rosemarie Nania: VEDS advocate, and community “Hero with a Heart”
How does Roe Nania feel about being named a ‘Hero with a Heart’ as part of the Marfan...
News from
The Marfan Foundation
Marfan and Loeys-Dietz Awareness Months Reach Nearly 1.2 Million People with Life-Saving Awareness, Raise Essential Funds
The results are in: during Marfan and Loeys-Dietz Awareness Months 2026, the...
Team Victory Goes the Distance at the Paris Marathon
This spring, in the heart of Paris, twelve women from across the U.S. came together...
The Marfan Foundation’s Global Reach, Lifesaving Impact
From European fundraising marathons to major international meetings, we’re advancing...
Raise Marfan Syndrome Awareness, Save Lives with the #LarsonLove Challenge
Marfan Foundation calls on theater community to honor Jonathan Larson's legacy through social...
Marfan Foundation Ranked #5 Best Nonprofit to Work for in 2026
Placed Highest in Foundation History, Chosen Among 50 Best Nationally by NonProfit...
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...
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