Overview of Cardiac Management in Marfan Syndrome Aortic dissection is the major cause of premature morbidity and mortality in Marfan syndrome. Aortic root aneurysm or dissection and ectopia lentis are cardinal features of Marfan syndrome based on the 2010 Gent nosology. For the full diagnostic criteria, please visit MarfanDX.org. Cardiac features that may be seen […]
People with Marfan syndrome are at up to 250 times greater risk of aortic dissection (a tear or rupture between layers of the aortic wall) than the general population. That’s why it’s important to know the signs of an aortic dissection and what to do. Symptoms of aortic aneurysm may be related to the location, […]
In order to have better outcomes in the emergency department for people with genetic aortic and vascular conditions, a Patient Care Coordination Note (PCCN), can provide triage nurses and ER physicians, with life-saving information for these rare conditions. This patient care coordination note appears in the upper left hand corner in red, when you open […]
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.
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 […]
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Know the signs. Fight for victory.
Join us in the fight for victory over genetic aortic and vascular conditions and help us create a brighter future for everyone living with these conditions.