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Stanford hosts national conference to update people on Marfan syndrome

The School of Medicine is hosting the National Marfan Foundation's annual conference July 12-15 with a series of programs that will enable people with Marfan syndrome and their families to meet top researchers and physicians.

About 600 people are expected to attend to learn about new medical research and network with other people with the disorder. Top Marfan researchers from throughout the United States are expected to attend as well, with most of the programs taking place at the Arrillaga Alumni Center.

Among those making presentations from Stanford are cardiothoracic surgeon Craig Miller, MD, who founded Stanford's Center for Marfan Syndrome and Related Aortic Disorders in 1988; David Liang, MD, associate professor of medicine (cardiovascular); and Sean Mackey MD, PhD, assistant professor of anesthesia.

Marfan syndrome is a potentially fatal genetic disorder of connective tissue that affects many parts of the body, including the skeletal system and the heart. People with Marfan syndrome are often unusually tall, with loose joints and disproportionately long arms, legs and fingers. Many of those with Marfan have an enlarged aorta, the main artery connecting the heart to the body, which leaves them at higher risk for aortic rupture resulting in sudden death. But the syndrome often goes undiagnosed.

General conference sessions take place on July 14 and 15. Registration for the conference is required and can be done on-site or in advance; information is available at www.marfan.org or by calling (800) 862-7326. The registration fee for the full conference is $375 for foundation members age 19 or older and $400 for non-members; those 18 and younger can register for free. One-day registration is $175 for members and $225 for non-members.