Emergency Alert Card
Download a PDF of our Emergency Alert Card which you can carry in your wallet.
Resource Library
Explore hundreds of free resources to help you on your journey.
Family Health History
Your family health history is a collection of health information about you and your close relatives. It contains information about disorders, diseases, and health problems that you and your children may be at risk for now or in the future. Most important, it can also help your doctors as they consider whether or not you […]
The Role of Genetic Testing in the Diagnosis of Marfan Syndrome
For years, geneticists and cardiologists have taken pride in their ability to identify individuals with Marfan syndrome based on clinical assessment alone, and have minimized a role for genetic testing in the diagnosis. Once the gene FBN1 was found to be the cause of Marfan syndrome, testing was undertaken to determine the role of genetic testing in […]
Endocarditis Prophylaxis for People with Marfan Syndrome
Endocarditis Prophylaxis for People with Marfan Syndrome In April 2007, the American Heart Association (AHA) revised its guidelines for antibiotic treatment at the time of dental procedures and other medical situations in which there is a high likelihood of bacteria entering the bloodstream. In general, the AHA guidelines are the “gold standard” in the United […]
Endovascular Repair in Marfan Syndrome Patients
Endovascular Repair in Marfan Syndrome Patients The Professional Advisory Board of The Marfan Foundation is in agreement with the Expert Consensus Document on the Treatment of Descending Thoracic Aortic Disease Using Endo-Vascular Stent-Grafts (Ann Thorac Surg 2008;85:S1-41) and the American Heart Association (AHA) guidelines entitled “Surgical Management of Descending Thoracic Aortic Disease: Open and Endovascular […]
Stickler Syndrome
Stickler syndrome is a group of genetic disorders that affects connective tissue, specifically collagen. The condition is characterized by facial abnormalities, ocular problems, hearing loss, and joint problems. What are the features of Stickler syndrome? How prevalent is Stickler syndrome? What other names do people use for Stickler syndrome? How is Stickler syndrome diagnosed? Find […]
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