http://www.marfan.orgThe National Marfan Foundation is dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.
http://www.marfanworld.org/
International Federation of Marfan Syndrome Organizations (IFMSO)
The International Federation of Marfan Syndrome Organizations (IFMSO) was formed to:
• Share current, accurate information about the Marfan syndrome worldwide and facilitate international communication among medical professionals and the general public.
• Establish standards for diagnosis and treatment of the Marfan syndrome.
• Support and foster research throughout the world and facilitate communication with research centers and researchers worldwide.
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