From Lived Experience to Healthcare Professional
How community members are shaping the future of care. For many in the Marfan Foundation...
The Marfan Blog
How a Marfan Foundation Conference Led to a Cross-Country Forever Friendship: Jennie & Danielle’s Story
Jennie Aucoin traveled to the Marfan Foundation Conference in Atlanta in July of...
Ready, Set, Transition: Helping Teens Step into Adult Care
For families navigating life with a genetic aortic and vascular condition, the move from pediatric...
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...
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,...
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