National Health Council — Voluntary Health Agency Guide

National Marfan Foundation

The National Marfan Foundation was founded in 1981 by people who have the Marfan syndrome and their families. It is a voluntary organization that aims to disseminate accurate and timely information about this condition to patients, family members and the health care community; provide a network of communications for patients and relatives to share experiences, support one another and improve their medical care; and to support and foster research.

About the condition(s):

The Marfan syndrome is a heritable disorder of the connective tissue that affects multiple organ systems, including the skeleton, lungs, eyes, heart and blood vessels. The life-threatening aspect of this disorder is that, if undiagnosed, it can cause seemingly healthy people to die suddenly due to an aortic dissection or rupture. The condition affects both men and women of any race or ethnic group. It is estimated that at least 200,000 people in the United States have the Marfan syndrome or a related connective tissue disorder.