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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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.
GeneReviews: Marfan Syndrome
Summary, diagnosis, clinical description, differential diagnosis, management, genetic counseling and molecular genetics.
International Federation of Marfan Syndrome Organizations
A global information center providing links to Organizations around the world.
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.
The Marfan Syndrome
A diary of the disease events in the life of someone with this condition. Includes a list of links.
A guide to this connective tissue disease.
Article from eMedicine.
A Question-Answer format page of information.
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.
Marfans Research Foundation
Irish charity with information on fund raising activities and the condition.
MFS Type 1 Fibrillin Gene
Major resources listed as well as genetic information.
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.
National Marfan Foundation
Providing accurate and timely information about the disorder to patients, family members and physicians.
NHS Choices: Marfan Syndrome
Provides information on this inherited condition that affects the body's connective tissues. Includes details of symptoms, causes, diagnosis and treatment.
Questions and Answers about Marfan Syndrome
From the National Institutes of Health.
Slovak Marfan Association
The association provides a network of patients, relatives and doctors in Slovakia, informs and helps patients to improve the medical care.
South African Marfan Syndrome Organisation
Information in English and Afrikaans,including an interactive diagnosis tool that allows for an accurate diagnosis.
The engineer who fixed his own heart and others too
The BBC reports on Tal Golesworthy, who didn’t like the available treatments for Marfan, so did better. (November 20, 2013)
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Last update:July 4, 2016 at 1:17:28 UTC