Marfan Syndrome is an inherited disorder of connective tissue which affects many organ systems including the skeleton, lungs, eyes, heart and blood vessels....
This page was last updated on September 28th, 2008
This page was last updated on September 28th, 2008
Marfan Syndrome (from Connective Tissue)
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Marfan Support and Information
Support group in New South Wales, Australia.
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.
Questions and Answers about Marfan Syndrome
From the National Institutes of Health.
University College London: The Timing of Elective Aortic Root Replacement in the Marfan Syndrome
Includes a survey for study and links to useful sites.
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.
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.
Slovak Marfan Association
The association provides a network of patients, relatives and doctors in Slovakia, informs and helps patients to improve the medical care.
Marfan Association UK
The support association in the UK for this genetic condition which can affect the heart, eyes and connective tissue.
Polish Marfan Association
General information including dealing with pregnancy with the disease. Also has contact information for the association and links to other organizations.
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.
Sports and Marfan Syndrome
Article on the risks of sports participation.
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.
Guide to Marfans Syndrome
Features forums, @marfanssyndrome.net email addresses and contains symptoms as well as guestbooks for both doctors and patients, a chat room and scheduled chats with professionals.
International Federation of Marfan Syndrome Organizations
A global information center providing links to Organizations around the world.
Theresa E. Pageau - A Memorial Tribute
A tribute to a patient with this disease accompanied by information and links related to donating.
National Marfan Foundation
Providing accurate and timely information about the disorder to patients, family members and physicians.
Univ. of Washington - Marfan Syndrome
What the disease is and includes the impacts on daily life.
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.
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.
Central Ohio Marfan Support Group
Focuses on the support group with links to information about the disease. Includes a calendar of events for meetings.
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.
MFS Type 1 Fibrillin Gene
A comprehensive site including major resources listed as well as genetic information.
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.
eCureMe.com -- Marfan's Syndrome
Description, symptoms, diagnoses, treatment and other information with a couple of similar disorders for comparison.
South African Marfan Syndrome Organisation
Information in English and Afrikaans,including an interactive diagnosis tool that allows for an accurate diagnosis.
A Diary about Marfan's
Marfan's patients diary of the diseases events in her life. Includes a list of links.
Marfan-List
Information about an e-mail mailing list. Also includes links to other online support groups.
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.
Support group in New South Wales, Australia.
Started by a person with the syndrome, this site offers support for any person with the disease as well as family of the person.
From the National Institutes of Health.
Includes a survey for study and links to useful sites.
Including lists of penpals and other ways to connect with the community as well as information about the Syndrome.
A history of the pharoah along with theories applied to what he may have had, including Marfan's.
The association provides a network of patients, relatives and doctors in Slovakia, informs and helps patients to improve the medical care.
The support association in the UK for this genetic condition which can affect the heart, eyes and connective tissue.
General information including dealing with pregnancy with the disease. Also has contact information for the association and links to other organizations.
Includes information on heart, skeletal, eye, other, causes, risks, management, and Surgery. Assisted by many graphics and a "tour" to help understand the disease.
Article on the risks of sports participation.
Information, articles, events, a patient survey, and products. Also contains an article on Pharaoh Akhenaten who was believe to have the disease.
Features forums, @marfanssyndrome.net email addresses and contains symptoms as well as guestbooks for both doctors and patients, a chat room and scheduled chats with professionals.
A global information center providing links to Organizations around the world.
A tribute to a patient with this disease accompanied by information and links related to donating.
Providing accurate and timely information about the disorder to patients, family members and physicians.
What the disease is and includes the impacts on daily life.
Describes the author's personal experiences with this Syndrome and asks readers to share their experiences. Also include links for further research.
Explores the idea that the disease is affected not by the fibrillin gene, but by one's diet.
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.
Focuses on the support group with links to information about the disease. Includes a calendar of events for meetings.
Includes definition, problems with blood vessels and cardiac valves, treatment, lifestyle changes, and links to other heart related conditions.
A comprehensive site including major resources listed as well as genetic information.
Online chapter from The Merck Manual of Medical Information.
Personal site by which describes the pathology and gives a bit of advice.
Description, symptoms, diagnoses, treatment and other information with a couple of similar disorders for comparison.
Information in English and Afrikaans,including an interactive diagnosis tool that allows for an accurate diagnosis.
Marfan's patients diary of the diseases events in her life. Includes a list of links.
Information about an e-mail mailing list. Also includes links to other online support groups.
This site is an in depth look into the life of someone who has Marfan Syndrome and what they have learned along the way.
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