The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congenital heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
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Marfan Syndrome Diagnosis
Marfan syndrome is a serious condition, and some complications are potentially life-threatening. Advances in medical care have made it possible for people with Marfan syndrome to live a normal lifespan if they are diagnosed and treated properly. What is Marfan syndrome? What causes Marfan syndrome? How is Marfan syndrome inherited? What are the features of […]
Tags: Marfan Syndrome , Patients & Families
Aortic Imagine: Your Questions Answered
Aortic Imagine: Your Questions Answered Dr. Venkat Polsani, Chief of Cardiovascular Imaging at Piedmont Heart Institute in Atlanta, provides an overview of the various types of aortic imaging most commonly used in people with Marfan, Loeys-Dietz, VEDS, and other genetic aortic and vascular condition and addresses questions from our community. Webinar recorded April 4, 2021.
Know the signs.
Fight for victory.
Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.