Related Resources
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.
Shprintzen-Goldberg Syndrome Fact Sheet
Shprintzen-Goldberg Syndrome is a condition that affects many parts of the body. People who have this syndrome have a combination of unique facial features and skeletal and neurological abnormalities. Shprintzen-Goldberg syndrome is caused by genetic changes (mutations) in a gene that contributes to the formation of connective tissue. How prevalent is Shprintzen-Goldberg syndrome? What are […]
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.