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Johns Hopkins Medicine, Marfan Foundation Hosting the 30th Annual Family Conference

Johns Hopkins Medicine and the Marfan Foundation are hosting the 30th Annual Family Conference July 10-13 for people with Marfan syndrome and related disorders.

Marfan syndrome belongs to a group of connective-tissue disorders characterized by certain bone malformations and joint laxity. The most serious and feared complication of Marfan syndrome and several other connective-tissue disorders is a dilation and rupture of the aorta, the body’s largest blood vessel that carries blood from the heart to the rest of the body. In some people, aortic aneurysms can be the very first manifestation of the disease. If diagnosed in childhood, Marfan syndrome and related disorders can be managed with drugs and/or surgery to head off the most life-threatening complications. Thus, experts say, early recognition is critical and can, sometimes, mean the difference between life and death.

Spotting and diagnosing these conditions, however, can be tricky because many of their hallmark features — long slender limbs and fingers, a spinal curvature or joint hyper-flexibility — are also found in healthy people.

Leading Marfan experts from Johns Hopkins, including cardiologists, cardiac surgeons, geneticists and orthopaedic surgeons will be conducting patient screenings July 10 and July 11 at The Johns Hopkins Hospital. General conference sessions and workshops will be held July 12 and 13 at the Marriott Harborplace in Baltimore. Attendees are invited to register for the general conference sessions; however, the deadline for patient screenings has passed.

Several years ago, a team of Johns Hopkins Marfan experts developed an algorithm with the most suggestive symptoms of Marfan and a closely related disorder known as Loeys-Dietz syndrome. This laundry list, the experts say, can be a helpful screening tool for family physicians, pediatricians and even parents.

For more information, please visit the Johns Hopkins Comprehensive Marfan Center.

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