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Web Sites in Category Marfan Syndrome
Marfan Syndrome  - Comprehensive guide to this connective tissue disease.
A Diary about Marfan's - Marfan's patients diary of the diseases events in her life. Includes a list of links.
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.
Awareness - Intended to raise awareness of this disease.
Canadian Marfan Association - Information, articles, events, a patient survey, and products. Also contains an article on Pharaoh Akhenaten who was believe to have the disease.
Central Ohio Support Group - Focuses on the support group with links to information about the disease. Includes a calendar of events for meetings.
Children's Heart Institute: What is Marfan Syndrome? - Includes information on heart, skeletal, eye, other, causes, risks, management, and Surgery. Assisted by many graphics and a "tour" to help understand the disease.
Congenital Heart: Marfan's Disease - Yale - Sole discussion of the heart issues and includes some video footage of echocardiograms and other heart studies.
eCureMe.com -- Marfan's Syndrome - Description, symptoms, diagnoses, treatment and other information with a couple of similar disorders for comparison.
eTenet - Marfan's Syndrome - Definition, description, symptoms and even treatments are covered here. There is also a list of questions one should ask their doctor.
Family Practice Notebook: Marfan's Syndrome - An outline of the disease with links to more information on the major symptoms.
Health Supervision for Children with Marfan Syndrome - Includes symptoms as well as how to deal with learning one has it.
International Federation of Marfan Syndrome Organizations - A global information center providing links to Organizations around the world.
Jeanette Navia's Marfan Life Website - Including lists of penpals and other ways to connect with the community as well as information about the Syndrome.
Life and Issues of Marfan's Syndrome - Personal site by which describes the pathology and gives a bit of advice.
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.
Marfan Association UK - The support association in the UK for this genetic condition which can affect the heart, eyes and connective tissue.
Marfan Syndrome Forum - Describes the author's personal experiences with this Syndrome and asks readers to share their experiences. Also include links for further research.
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. Also examines this role in other disorders.
Marfan's Syndrome: Information and Support - Features forums, @marfanssyndrome.net email addresses and contains symptoms as well as guestbooks for both doctors and patients, a chat room, scheduled chats with professionals and links to its own Yahoo Support Group
Marfan-List - Information about an e-mail mailing list. Also includes links to other online support groups.
MedicineNet.com - Marfan Syndrome - A Question-Answer format page of information.
MFS Type 1 Fibrillin Gene - A comprehensive site including major resources listed as well as genetic information.
MyDiseaseDex - Marfan Syndrome - An overview including terms and books associated with Marfan's.
National Marfan Foundation - Providing accurate and timely information about the disorder to patients, family members and physicians.
Polish Marfan Association - General information including dealing with pregnancy with the disease. Also has contact information for the association and links to other organizations.
Slovak Marfan Association - The association provides a network of patients, relatives and doctors in Slovakia, informs and helps patients to improve the medical care.
Stanford University Marfan Center - Research, testing and care for Marfan Syndrome and related connective tissue disorders, with a list of FAQs.
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.
The FBN1 Gene Mutations Database - Focuses on the gene that is believed to cause the syndrome. Includes links to software and general information about the disorder.
The Mystery of Akhenaten: Genetics or Aesthetics? - A history of the pharoah along with theories applied to what he may have had, including Marfan's.
Theresa E. Pageau - A Memorial Tribute - A tribute to a patient with this disease accompanied by information and links related to donating.
Univ. of Washington - Marfan Syndrome - What the disease is and includes the impacts on daily life.
University College London: The Timing of Elective Aortic Root Replacement in the Marfan Syndrome - Includes a survey for study and links to useful sites.
Yahoo! Support Group - Started by a person with the syndrome, this site offers support for any person with the disease as well as family of the person.
Related Categories:
Health > Conditions and Diseases > Musculoskeletal Disorders > Connective Tissue > Hypermobility Syndrome
Health > Conditions and Diseases > Musculoskeletal Disorders > Connective Tissue > Ehlers-Danlos Syndrome
Related Newsgroups:
alt.support.marfan – Google
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