Stanford University Marfan Syndrome and Related Aortic Disorders

History and Mission

The Stanford University Marfan Center was established in 1988 by Dr. D. Craig Miller at the urging of the local chapter of the National Marfan Foundation based upon the perceived need to establish a specialized care center in the western United States. To reflect the broader mission of the Center our name has changed to The Stanford University Center for Marfan Syndrome and Related Aortic Disorders.

Marfan syndrome was initially described in 1896 and is now recognized as a genetic disorder of connective tissue that affects the bones, joints, eyes, blood vessels and the heart. Recent studies in molecular genetics have identified the fibrillin gene product as the defective connective tissue protein that causes Marfan syndrome. Marfan syndrome affects approximately 1 per 5,000 individuals throughout the world including both genders as well as all races and ethnic groups. Prior to innovations in the medical and surgical management of this disease, most patients died of cardiovascular complications by the age of 50.

The central mission of the Stanford University Center for Marfan Syndrome and Related Aortic Disorders is to be an integrated, multi-disciplinary unit that provides comprehensive, cost-effective, state-of-the-art diagnostic evaluation and care for adult and pediatric patients with Marfan syndrome and related aortic disorders including familial aortic disease and bicuspid aortic valve disease. Our ultimate goal is to enable our patients to live long productive and fulfilling lives despite the limitations of these genetic disorders. Toward that goal, the members of the center are working to understand how the type of mutation affects the clinical manifestations of Marfan syndrome, familial aortic disease and bicuspid aortic valve disease and on new surgical options such as valve sparing aortic root replacement surgery.

The National Marfan Foundation, Stanford Hospital and Clinics and Stanford University School of Medicine will be hosting the NMF's 23rd Annual Conference on Marfan Syndrome and Related Disorders, July 12-15, 2007.  Conference attendees will be able to attend presentations by some of the world's leading experts on the diagnosis and treatment of Marfan syndrome and its related disorders.  Information about the latest advances in research related to the Marfan family of disorders will also be available.  The conference is not, however, merely a learning and information gathering experience.  It is also a time to come together as the "Marfan Community" - to share our stories with new friends and to reunite with those we have met at conferences past.  At the same time, our parents, children, siblings, spouses, significant others and loved ones will join with us to share their experiences of traveling with us on our life journey of living with Marfan syndrome.

Staff of The Stanford University Center for Marfan Syndrome and Related Aortic Disorders

Some Questions and Answers about the Center

• Where is the Center physically located?
• What kind of specialties do you have at the Stanford University Center for Marfan Syndrome and Related Aortic Disorders?
• Does your Center see other patients besides those with the Marfan syndrome?
• When does the Stanford University Center for Marfan Syndrome and Related Aortic Disorders hold clinics?
• How is the Marfan syndrome diagnosed?
• Is there a specific laboratory test that can be done to diagnose Marfan syndrome, familial aortic disease and bicuspid aortic valve disease?
• What are typical appointments needed for a new patient evaluation?
• Do you accept self referrals?
• Are you able to determine over the phone as to whether I should be seen?
• How can appointments through the Stanford University Center for Marfan Syndrome and Related Aortic Disorders be scheduled?
• Will my insurance cover appointments through the Stanford University Center for Marfan Syndrome and Related Aortic Disorders?
• Do you need previous Medical Records?
• Can you advise me regarding physical activity restrictions prior to my appointment?
• Is there research related to Marfan syndrome and related aortic disorders going on at Stanford?

Other Resources

National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050-9801
1-800-8-MARFAN ext 10 (1-800-862-7326)
1-516-883-8712
Fax: 1-516-883-8040
e-mail: staff@marfan.org

Northern California Chapter of the National Marfan Foundation
Contact Person: Vicky Prager  E-mail: vprager@california.com

The logo at the top of the left of this page was adapted from original artwork by Susan Imhoff.

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