After 10 Operations, Teenager Olivia Nguyen Pays It Forward by Volunteering and Raising Awareness of Loeys-Dietz Syndrome
Hoan and Danette Nguyen remember being confused when their daughter, Olivia, “suddenly...
The Marfan Blog
3 Ways Therapy Can Help You Cope with Chronic Pain
Doré Schubert knows well the emotional toll of living with chronic pain. Diagnosed with Marfan...
Living with Marfan Syndrome: How Doré Schubert Turned Years of Medical Challenges into a Career in Mental Health
Doré Schubert was diagnosed with Marfan syndrome at age two after experiencing a dislocated...
Thank You VEDS Community: Annual Houston VEDS Party & Walk for Victory
A gratitude-filled reflection from VEDS Movement Director Ryan Rodarmer, MS Ryan Rodarmer,...
Healing Mentally and Physically After Aortic Dissection
During Mental Health Awareness Month, we recognize that the impact of a genetic aortic or...
“Alone we are rare, together we are strong!”: Rare Disease Day Advocacy 2026
Director Loeys-Dietz and Marfan for the Marfan Foundation Stacey Watson shares her...
A mom’s perspective on life in the Philippines with early-onset Marfan syndrome
Penelope shared her first-person story for Marfan Awareness Month. Hi! My name is...
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