Marfan Syndrome

The National Marfan Foundation (NMF)

382 Main St

Port Washington, NY 11050

Phone: (800) 8-MARFAN

E-Mail: staff@marfan.org

Web site: http://www.marfan.org/

- Physical Education and Activity Guidelines

- Resource Manual

- Molecular Testing for Marfan Syndrome, Professional Advisory Board

Canadian Marfan Association, includes Similar Disorders to Marfan Syndrome [Beals (Congenital Contractual Arachnodactyly), Ehlers Danlos, Hajdu Cheney]

Marfan Network Japan

Pomagamy chorym z Zespolem Marfana i ich rodzinom, Marfan Association Poland

Other Sites:

• Stanford University Center for Marfan Syndrome
• Adult Congenital Heart Network, Canadian Adult Congenital Heart Network, Toronto Congenital Cardiac Centre for Adults, and International Society Of Adult Congenital Cardiac Disease
• Marfan Syndrome Web Site, individual with Marfan Syndrome
• Aneurysm Information Project
• Marfan Syndrome Information, American Heart Association
• Marfan Syndrome - Public Health Information Sheet, March of Dimes
• Tall Clubs International

Also See:

• National organizations and resources 
• Other connective tissue syndrome resources

To locate a genetic counselor or geneticist in your area:

• Professional Genetics Societies
• Genetic clinics, centers, departments

Revised April 19, 2007

   

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Genetics Education Center
University of Kansas Medical Center © 1995-2008
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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