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Marfan Syndrome Articles, Information & Web Sites

Updated: 01/26/2007




eMedicine.com - They have a great explanation of the Marfan Syndrome - Warning, very long page!


Harry (Hal) Dietz, MD - The Johns Hopkins Comprehensive Marfan Center - The Johns Hopkins Marfan Center stands ready to assist any patient (adult or child) suspected of having the Marfan Syndrome.* Located at John Hopkins University. They also have Department of Molecular Biology & Genetics.


International Federation of Marfan Syndrome Organizations - The IFMSO website provides information relating to the International Federation of Marfan Syndrome Organizations (IFMSO) and the Marfan syndrome...

Please visit our Members page, where you will find links to over twenty-five member country's websites and associated e-mail contacts. This comprehensive worldwide directory provides easy access to current information and recent international news about the Marfan syndrome and The International Federation of Marfan Syndrome Organizations (IFMSO), all presented in your own language. Just find your country and click on the link.
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Jeanette Navia's MarfanLife Web Site - Marfan Life is a place where people with the Marfan syndrome can learn from and meet others who live with Marfan. It is run by Jeanette Navia. I am 48 years old and have the Marfan syndrome. Information is my career; I am a cataloger in a public library and am currently studying for a Masters’ degree in Information Studies. Growing up, information about the Marfan syndrome was very difficult to find. Today, the Internet makes finding medical information about the syndrome much easier. It also makes sharing information between people and families dealing with the syndrome much easier, also.

I started Marfan-List in May, 1997 when it became clear that a need existed for people with the syndrome to discuss how they lived their lives. It is an e-mail discussion list, popularly called a “listserv.” I started Marfan Life when blogs were starting to be in fashion as a way of listing articles — mostly in the popular press — so people interested in Marfan could read more about the syndrome. Marfan Life Forum, a bulletin-board-based discussion group, was started in 2003. Unlike Marfan-List, posts to the Marfan Life Forum are open for the public to read.

If you would like to show appreciation for Marfan-List, Marfan Life and/or the Marfan Life Forum, please consider making a donation to the National Marfan Foundation for general support in honor of Marfan-List.
* Jeanette recently started a Marfan Syndrome Wiki too! This is an awesome site for Marfan related information and to find other Marfs if you wish to talk with someone about Marfans syndrome. What a wonderful web site, Thanks Jeanette!!


Long Tall Folks - Welcome to the Marfan journal. This differs from mail lists or chat groups. It is completely public, but is a good place for your marfan related issues, especially if you want them available in the future, with time dates. You have to be a Live Journal user to join, but anyone can reply to any post. For now, it is set on "anyone can post". We are, after all, an outstanding group.*


National Human Genome Research Institute - Learning About Marfan Syndrome

  • What is Marfan syndrome?
  • What are the symptoms of Marfan syndrome?
  • How is Marfan syndrome diagnosed?
  • What is the treatment for Marfan syndrome?
  • Is Marfan syndrome inherited?
  • Clinical Research on Marfan Syndrome
  • Additional Resources for Marfan Syndrome
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    National Library of Medicine explanation of the Marfan Syndrome


    National Marfan Foundation - The Marfan syndrome is a heritable disorder of the connective tissue that affects many organ systems, including the skeleton, lungs, eyes, heart and blood vessels. The condition affects both men and women of any race or ethnic group. It is estimated that at least 200,000 people in the United States have the Marfan syndrome or a related connective tissue disorder.*


    Oregon Chapter National Marfan Foundation - Welcome to our web site. We will strive to keep this site up to date with the latest in local Oregon chapter news, as well as provide links to the latest information from around the world. Please check back often as we will try to update it frequently.*


    SupportMarfan.com launched on January 27, 2005 to facilitate charitable giving to the National Marfan Foundation. The NMF is a foundation dedicated to funding research and awareness of Marfan Syndrome, a serious condition affecting connective tissue.

    The site was founded by Rick Whittington as a tribute to his sister, Julie Whittington, who has Marfan Syndrome. Julie has had many surgeries to correct the effects associated with the condition. Rick seeks to raise as much money as possible for the National Marfan Foundation in hopes that better treatment can be discovered.

    SupportMarfan.com partners with many online businesses that people shop with everyday. By partnering with these businesses, SupportMarfan.com receives a percentage of your online purchase and then donates it to the National Marfan Foundation. Just by shopping, you can generate money for Marfan support and awareness!
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    The Tomson/Innes Family's web site has Marfan Syndrome information. This is the Western Washington State Marfan Syndrome Foundation who hopes to provide information, contacts, and support for persons and families in Washington State who are dealing with Marfan Syndrome.*


    Treatment of Marfan Syndrome at Mayo Clinic in Rochester - Marfan syndrome is a disorder of the connective tissue in the body. It can affect the skeletal system, blood vessels, heart, lungs, eyes and other organ systems. Marfan syndrome can be inherited from either parent, or it can result from a new change in genetic material. There is a 50-50 chance that children will inherit the disorder from their parent. Approximately 200,000 people in the United States have Marfan syndrome, and it can occur in men or women of any race or ethnic group. Many affected individuals are young adults, adolescents or children.*


    University of Washington - Marfan syndrome is a rare hereditary disorder that causes connective tissue to be weaker than normal.

    Connective tissue is the most abundant tissue in the body. It supports and protects various other tissues, is a vital component of all organs in the body, and provides strength and elasticity to blood vessels. Therefore, a disorder of connective tissue can cause a variety of abnormal conditions. For people with Marfan syndrome, weak connective tissue causes problems of the skin, muscles, ligaments, heart, eyes, blood vessels, and bones.
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