Marfan Awareness Month 2024 Wins PR Daily Awards for Social Media & Engagement, Innovation Mention
Thanks to the heartfelt and diverse ways in which our community members shared their everyday...
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.
The Marfan Foundation announces alignment with global Think Aorta campaign to amplify key life-saving messages, starting with Aortic Dissection Awareness Week 2024 (9/19 – 9/26)
Aims to save more lives through rapid ID of symptoms and urgent CT scan diagnoses The...
First Person: Aida’s experiences as a mom with Marfan syndrome
My name is Aida, I'm from Mexico. In 2003 I came to United States to live. One of my sons,...
Foundation presents first-ever London Symposium: Living Better with Marfan, Loeys-Dietz, & VEDS
Co-presented by our friends from Annabelle's Challenge, Marfan Trust, The Aortic Dissection...
TromsoAorta 2024 Convenes Scientists, Sparks Hope
This week, leading experts from around the world came together for a joint meeting of the GenTAC...
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...
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