Stanford University Center for Marfan Syndrome and 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.  The Stanford University Center for Marfan Syndrome and Aortic Disorders became the first of its kind in the western United States.  Through our multidisciplinary approach, patients with MFS now have a normal life expectancy. 

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 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 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.

In 2010 the Stanford Center for Inherited Cardiovascular Disease was established. At the Stanford Center for Inherited Cardiovascular Disease, we specialize in the care of patients and families with genetic disorders of the heart and blood vessels. Our care extends from the youngest to the oldest members of your family. From the close working relationship between our child and adult cardiologists to the outstanding nursing and genetic counseling teams; from state-of-the art imaging to the very latest in medical and surgical therapies; from friendly clinic staff to multidisciplinary meetings that offer you many opinions on your case - we always strive to be the best we can be, so you can live your life to the full.

Stanford specializes in aortic valve sparing aortic root replacement surgery, repairing the aneurysm while preserving the patient's own aortic valve to avoid the use of long-term anti-coagulants and reducing the risk of stroke or endocarditis.  Genetic molecular research is taking place to identify genetic changes believed to be related to Marfan syndrome and other inherited aortic disorders.  We are one of only a few centers in the US actively researching new medical treatments for MFS that could potentially eliminate the development of vascular complications and subsequently decrease the need for operative interventions in our patients.

Stanford consistently ranks among U.S. News and World Report's top hospitals for cardiovascular care.  Additionally, the Society of Thoracic Surgeons ( STS ) has recently developed a comprehensive rating system that allows for comparisons regarding the quality of cardiac surgery among hospitals across the country. Approximately 10% of hospitals receive the “3 star” rating, which denotes the highest category of quality. This quality rating covers combined calendar years 2008 and 2009. Stanford Hospital was only hospital in the San Francisco Bay Area to receive the STS 3 star (best) mortality rating, indicating that the cardiac surgery performance of our hospital lies in the highest quality tier.   Clinical outcomes are the ultimate validation of the effectiveness and quality of medical care:  They encourage effective health care decisions and drive informed health care policy.  Our Cardiovascular programs are committed to sustaining scrupulous evaluation, advance technology, evidence-based practice, clinical research, professional education and our national reputation.

Today The Stanford University Center for Marfan Syndrome and Aortic Disorders, under its director, Dr. David H. Liang, is the largest of its kind in the Western United States and one of the largest in the country.  It also serves as a global model and is often visited by guests from hospitals looking to build their own center.

Staff of The Stanford University Center for Marfan Syndrome and 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 Aortic Disorders?
• Does your Center see other patients besides those with the Marfan syndrome?
• When does the Stanford University Center for Marfan Syndrome and 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 Aortic Disorders be scheduled?
• Will my insurance cover appointments through the Stanford University Center for Marfan Syndrome and 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 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@sfo.com.

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

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