The Marfan Foundation is a nonprofit organization that saves and improves lives while creating a community for all individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.
Together, We Can Know the Signs
and Fight for Victory
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Latest Research and Updates
The Marfan Foundation is the primary source for up-to-date and trustworthy information for patients and family members as well as healthcare providers and researchers. If you or someone you love has Marfan syndrome or a related conditions, we offer easy-to-understand materials to help you on your medical journey.
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Stories of Hope
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Call Her Wonder Woman: Percussionist Bella Sera Rocks On!
When Bella Sera was growing up in Houston, Texas, she was tired of other kids calling her derogatory names due to her Marfan-syndrome-related tall stature, so she told them to call her “an Amazon” instead.“If you’re going to call…
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“A Better Perspective and Stronger Determination”: Justice Adrienne W. Albrecht’s Life with a “Marfan Body”
Adrienne W. Albrecht says she learned to read with her nose “practically touching the book.” “My eyes were so loose when I was born, they told my mother not to let me have any serious falls," said Albrecht. After a…
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Leaving home for the first time and living with Marfan: “I have truly discovered the power and strength that lives within me.”
Guest blogger Coley Jackson, 21, of Raleigh, NC is a current student at James Madison University. She is a psychology major and a criminal justice minor working towards graduate school and a PhD. She has hopes to be an advocate for Marfan…
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