| Directory > Health > Conditions and Diseases > Musculoskeletal Disorders > Connective Tissue > Marfan Syndrome Family Practice Notebook: Marfan's Syndrome
An outline of the disease with links to more information on the major symptoms.
http://www.fpnotebook.com/RHE65.htm
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Marfan Syndrome
Comprehensive guide to this connective tissue disease.
http://www.ygyh.org/marfan/whatisit.htm
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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.
http://jrmarfan58.com
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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.
http://www.umd.necker.fr/Site%20Marfan/01AHOME%20PAGE.html
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MyDiseaseDex - Marfan Syndrome
An overview including terms and books associated with Marfan's.
http://www.ehendrick.org/healthy/000875.htm
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Awareness
Intended to raise awareness of this disease.
http://www.radecki.info/marfans/
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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.
http://www.ctds.info/marfan.html
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A Diary about Marfan's
Marfan's patients diary of the diseases events in her life. Includes a list of links.
http://www.angelfire.com/ms2/CysticFibrosisMarfan/standingtall.html
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Theresa E. Pageau - A Memorial Tribute
A tribute to a patient with this disease accompanied by information and links related to donating.
http://solo23.abac.com/billrobert/Theresa/theresa1.html
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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
http://www.marfanssyndrome.net
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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.
http://www.childrenheartinstitute.org/educate/marfan/marfan.htm
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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.
http://www.heptune.com/Marfans.html
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Central Ohio Support Group
Focuses on the support group with links to information about the disease. Includes a calendar of
events for meetings.
http://www.homestead.com/marfansupport/
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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.
http://hometown.aol.com/bjthaler6/myhomepage/
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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.
http://user.tninet.se/~sda301a/
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Polish Marfan Association
General information including dealing with pregnancy with the disease. Also has contact information
for the association and links to other organizations.
http://www.marfan.sprint.pl/
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Health Supervision for Children with Marfan Syndrome
Includes symptoms as well as how to deal with learning one has it.
http://www.aap.org/policy/00978.html
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MedicineNet.com - Marfan Syndrome
A Question-Answer format page of information.
http://www.medicinenet.com/Script/Main/Art.asp?li=MNI&ag=Y&ArticleKey=411
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MFS Type 1 Fibrillin Gene
A comprehensive site including major resources listed as well as genetic information.
http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?154700
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Univ. of Washington - Marfan Syndrome
What the disease is and includes the impacts on daily life.
http://www.orthop.washington.edu/arthritis/types/marfan/01
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Congenital Heart: Marfan's Disease - Yale
Sole discussion of the heart issues and includes some video footage of echocardiograms and other
heart studies.
http://www.med.yale.edu/intmed/cardio/chd/e_marfan/
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eCureMe.com -- Marfan's Syndrome
Description, symptoms, diagnoses, treatment and other information with a couple of similar
disorders for comparison.
http://www.ecureme.com/emyhealth/data/Marfan's_Syndrome.asp
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Marf Kids Club
Includes short stories on multiple kids with the disease along with a link to a Marfan Web Ring.
http://www.glorysite.com/marfan.html
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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.
http://www.etenet.com/Apps/Library/Corporate.asp?ID=607
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International Federation of Marfan Syndrome Organizations
A global information center providing links to Organizations around the world.
http://www.marfanworld.org/
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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.
http://groups.yahoo.com/group/Marfan_Syndrome/
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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.
http://www.americanheart.org/presenter.jhtml?identifier=4672
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Slovak Marfan Association
The association provides a network of patients, relatives and doctors in Slovakia, informs and
helps patients to improve the medical care.
http://members.fortunecity.com/marfan
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Life and Issues of Marfan's Syndrome
Personal site by which describes the pathology and gives a bit of advice.
http://www.io.com/~cortese/marfan/
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Stanford University Marfan Center
Research, testing and care for Marfan Syndrome and related connective tissue disorders, with a list
of FAQs.
http://marfan.stanford.edu/
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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.
http://www.marfan.ca/
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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.
http://www.marfanlife.org
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Marfan-List
Information about an e-mail mailing list. Also includes links to other online support groups.
http://www.marfan-list.org
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Marfan Syndrome
Includes clinical signs of the disease along with current research, help groups, images of people
affected by the disorder and a fair amount of references.
http://www.mssc.edu/biology/B305/GTS/ss97/marfans/marfans.htm
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National Marfan Foundation
Providing accurate and timely information about the disorder to patients, family members and
physicians.
http://www.marfan.org/
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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.
http://www.marfan.org.uk
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University College London: The Timing of Elective Aortic Root Replacement in the Marfan Syndrome
Includes a survey for study and links to useful sites.
http://www.ucl.ac.uk/~ucahywc/
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