TromsoAorta 2024 Convenes Scientists, Sparks Hope
This week, leading experts from around the world came together for a joint meeting of the GenTAC...
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.
Aortic Dissection Survivor David Noe’s Experience Leads to Family Members’ Marfan Diagnoses and Preventative Surgeries
“All of a sudden, I just had a crushing chest pain.” David Noe, who had spent large...
Social Security’s Expanded Compassionate Allowances Matter for Families Living with Neonatal Marfan Syndrome
On August 12, the Social Security Administration (SSA) announced an update to its compassionate...
Foundation Volunteers Convene Expert Group that Releases First-Ever AHA Pediatric Aortopathy Scientific Statement
August 12th, 2024, became a historic day for the genetic aortic and vascular conditions...
2024 Community-Curated Fashion Guide Released
We know that shopping for clothes that look and feel great can be challenging, particularly for...
Welcome Nurse Stephanie
The Marfan Foundation is pleased to welcome Stephanie Amdur-Clark, our new Help and Resource...
2024 Global Virtual Conference Recap
Our 2024 Global Virtual Conference connected people living with genetic aortic and...
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