National Marfan Foundation Launches New Web Site Offering Easy-to-Access Information on the Marfan Syndrome for Medical Professionals and Lay People

PORT WASHINGTON, NY (February 2, 2004) – The National Marfan Foundation is re-launching its web site, www.marfan.org, to better provide the medical community and the general public with information about the Marfan syndrome.



The Marfan syndrome is a potentially life-threatening genetic disorder of connective tissue. The Marfan syndrome and related connective tissue disorders affect approximately 200,000 Americans. Because connective tissue makes up the entire body, the disorder manifests itself in many body systems, including the skeletal system, eyes, lungs, blood vessels and heart. Many people with Marfan syndrome experience an expansion of the aorta. Without proper monitoring and medications to reduce the stress on the aorta, affected people are at high risk for aortic dissection or rupture, which could result in sudden death.


Recent studies about the increased life expectancy for people with Marfan syndrome provide great hope and optimism, but only through increased awareness, earlier diagnosis and proper treatment can people with the disorder expect to live a normal life span.


The Web Site

The web site, www.marfan.org, provides separate tracks for health care providers and for people affected by the Marfan syndrome. All NMF medical education brochures and consumer fact sheets are accessible on-line.


Affected people can also find out about local support groups and chapters, and discover volunteer opportunities for the Foundation. Additionally, extensive information about the NMF’s Annual Conference is available on-line.


The National Marfan Foundation

The NMF was founded in 1981 to provide accurate and timely information about the disorder to patients, family members and physicians; to serve as a resource for medical information and patient support; and to foster research.

To obtain additional information about the conference and to register, please call the NMF at 800-8-MARFAN or visit the NMF on line at www.marfan.org.