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Home / Health / Conditions and Diseases / Musculoskeletal Disorders / Connective Tissue / Marfan Syndrome
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Web Sites
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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.
www.angelfire.com/ms2/CysticFibrosisMarfan/standingtall.html
- 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.
www.americanheart.org/presenter.jhtml?identifier=4672
- 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.
www.marfan.ca
- Central Ohio Support Group - Focuses on the support group with links to information about the disease. Includes a calendar of events for meetings.
www.homestead.com/marfansupport
- 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.
www.childrenheartinstitute.org/educate/marfan/marfan.htm
- Congenital Heart: Marfan's Disease - Yale - Sole discussion of the heart issues and includes some video footage of echocardiograms and other heart studies.
www.med.yale.edu/intmed/cardio/chd/e_marfan
- eCureMe.com -- Marfan's Syndrome - Description, symptoms, diagnoses, treatment and other information with a couple of similar disorders for comparison.
www.ecureme.com/emyhealth/data/Marfan's_Syndrome.asp
- 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.
www.etenet.com/Apps/Library/Corporate.asp?ID=607
- Family Practice Notebook - An outline of the disease with links to more information on the major symptoms.
www.fpnotebook.com/RHE59.htm
- General Practice Notebook - Marfan's syndrome - Clinically-oriented information.
www.gpnotebook.co.uk/MedwebPage.cfm?ID=-1462763518
- Health Supervision for Children with Marfan Syndrome - Includes symptoms as well as how to deal with learning one has it.
www.aap.org/policy/00978.html
- International Federation of Marfan Syndrome Organizations - A global information center providing links to Organizations around the world.
www.marfanworld.org
- 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.
www.marfanlife.org
- Life and Issues of Marfan's Syndrome - Personal site by which describes the pathology and gives a bit of advice.
www.io.com/~cortese/marfan
- Marf Kids Club - Includes short stories on multiple kids with the disease along with a link to a Marfan Web Ring.
www.glorysite.com/marfan.html
- Marfan Association UK - The support association in the UK for this genetic condition which can affect the heart, eyes and connective tissue.
www.marfan.org.uk
- Marfan Database: Fibrillin-1 Gene Mutations - Focuses on the gene that is believed to cause the syndrome. Includes links to software and general information about the disorder.
www.umd.necker.fr/Site%20Marfan/01AHOME%20PAGE.html
- 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.
www.mssc.edu/biology/B305/GTS/ss97/marfans/marfans.htm
- 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.
hometown.aol.com/bjthaler6/myhomepage
- 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.
www.mindspring.com/~sandysimmons/marfan.html
- 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
www.marfanssyndrome.net
- Marfan-List - Information about an e-mail mailing list. Also includes links to other online support groups.
www.marfan-list.org
- MedicineNet.com - Marfan Syndrome - A Question-Answer format page of information.
www.medicinenet.com/Script/Main/Art.asp?li=MNI&ag=Y&ArticleKey=411
- MFS Type 1 Fibrillin Gene - A comprehensive site including major resources listed as well as genetic information.
www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?154700
- MyDiseaseDex - Marfan Syndrome - An overview including terms and books associated with Marfan's.
www.ehendrick.org/healthy/00056100.html
- National Marfan Foundation - Providing accurate and timely information about the disorder to patients, family members and physicians.
www.marfan.org
- OcularTimes.Com--[Marfan's Syndrome] - A quick summary with a focus on the accompanying eye problems. An informative guide to eye disorders and related eye care topics.
www.geocities.com/ocular_times/marfan.html
- Polish Marfan Association - General information including dealing with pregnancy with the disease. Also has contact information for the association and links to other organizations.
www.marfan.sprint.pl
- Slovak Marfan Association - The association provides a network of patients, relatives and doctors in Slovakia, informs and helps patients to improve the medical care.
members.fortunecity.com/marfan
- Stanford University Marfan Center - Research, testing and care for Marfan Syndrome and related connective tissue disorders, with a list of FAQs.
marfan.stanford.edu
- 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.
user.tninet.se/~sda301a
- The Lavin Family and Marfan's - Personal experience with the cardiac aspects of the disease, along with familial diagnoses.
www.jarlath.co.uk/html/marfan.html
- 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.
www.heptune.com/Marfans.html
- Theresa E. Pageau - A Memorial Tribute - A tribute to a patient with this disease accompanied by information and links related to donating.
solo23.abac.com/billrobert/Theresa/theresa1.html
- Univ. of Washington - Marfan Syndrome - What the disease is and includes the impacts on daily life.
www.orthop.washington.edu/arthritis/types/marfan/01
- University College London: The Timing of Elective Aortic Root Replacement in the Marfan Syndrome - Includes a survey for study and links to useful sites.
www.ucl.ac.uk/~ucahywc
- Virtual Support Group - Personal stories. Also includes links to major Marfan support sites and a guestbook for patients and their experience.
marfan.50megs.com
- 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.
groups.yahoo.com/group/Marfan_Syndrome
- Marfan Syndrome - Comprehensive guide to this connective tissue disease.
www.yourgenesyourhealth.org/ygyh/mason/ygyh.html?syndrome=marfan
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