Marfan Syndrome Connective Tissue Musculoskeletal Disorders

Marfan Syndrome is an inherited disorder of connective tissue which affects many organ systems including the skeleton, lungs, eyes, heart and blood vessels.

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• Marfan Association UK - The support association in the UK for this genetic condition which can affect the heart, eyes and connective tissue.
  
• MFS Type 1 Fibrillin Gene - Major resources listed as well as genetic information.
  
• A Diary about Marfan's - Marfan's patients diary of the diseases events in her life. Includes a list of links.
  
• Living With Marfans - This site is an in depth look into the life of someone who has Marfan Syndrome and what they have learned along the way.
  
• Canadian Marfan Association - Information, articles, events, a patient survey, and products. Also includes an article on Pharaoh Akhenaten who was believe to have the disease.
  
• Marfan Syndrome - Online chapter from The Merck Manual of Medical Information.
  
• Life and Issues of Marfan's Syndrome - Personal site by which describes the pathology and gives a bit of advice.
  
• Marfan Syndrome: Does Diet Play a Role - Explores the idea that the disease is affected not by the fibrillin gene, but by one's diet.
  
• Marfan Support and Information - Support group in New South Wales, Australia.
  
• Polish Marfan Association - General information including dealing with pregnancy with the disease. Also has contact information for the association and links to other organizations.
  
• Univ. of Washington - Marfan Syndrome - What the disease is and includes the impacts on daily life.
  
• International Federation of Marfan Syndrome Organizations - A global information center providing links to Organizations around the world.
  
• The Mystery of Akhenaten: Genetics or Aesthetics? - A history of the pharaoh along with theories applied to what he may have had, including Marfan's.
  
• Marfans Research Foundation - Irish charity with information on fund raising activities and the condition.
  
• Marfan-List - Information about an e-mail mailing list. Also includes links to other online support groups.
  
• American Heart Association - Marfan's Syndrome - Includes definition, problems with blood vessels and cardiac valves, treatment, lifestyle changes, and links to other heart related conditions.
  
• Questions and Answers about Marfan Syndrome - From the National Institutes of Health.
  
• National Marfan Foundation - Providing accurate and timely information about the disorder to patients, family members and physicians.
  
• Slovak Marfan Association - The association provides a network of patients, relatives and doctors in Slovakia, informs and helps patients to improve the medical care.
  
• Swedish Marfan Association - Here you can find plenty of information the disease including symptoms and other disorders that are similar to Marfan's. Also contains information about the Swedish Association.
  
• South African Marfan Syndrome Organisation - Information in English and Afrikaans,including an interactive diagnosis tool that allows for an accurate diagnosis.
  
  

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