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.
Related Resources
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 […]
Tags: Marfan Syndrome , Patients & Families
Loeys-Dietz Syndrome Emergency Alert Card
Download the Loeys-Dietz Syndrome Foundation's Emergency Alert Card, as well as watch a short instructional video we put together to show exactly how to fill out and fold this card.
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.