Walk for Victory Registration Guide
Register for your Walk for Victory by following the simple steps in our registration guide. Whether you join as an individual or create a team, we look forward to seeing you soon!
Resource For: Patients & Families
Notfall-Bereitschafts Paket
Dieses Kit ist Ihr Werkzeug, um im Notfall vorbereitet zu sein. Wir empfehlen, das fertige Paket in einen bunten Umschlag oder Ordner zu legen, damit es leicht zu finden ist.
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.
Genetic Testing and Marfan Syndrome
Genetic testing for mutations in fibrillin-1 (FBN1) and other genes has become an important and reliable option to aid in the diagnosis of Marfan syndrome and related disorders. However, the results of genetic testing for the diagnosis of disorders are not always straightforward. Therefore, working with a medical geneticist (a physician with training in genetics) […]
Family Planning and Pregnancy
Decisions about family planning can be difficult and very emotional when one of the prospective parents has a genetic disorder, such as Marfan syndrome. Before making any decisions, parents should understand the many options now available, as well as the potential risks to the child and the mother. A genetic counselor or the nurse in […]
Request Materials
Use this form to request printed versions of our fact sheets, brochures, and booklets.
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