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| Web Pages |
| University College London: The Timing of Elective Aortic Root Replacement in the Marfan Syndrome |
| Includes a survey for study and links to useful sites. |
| Virtual Support Group |
| Personal stories. Also includes links to major Marfan support sites and a guestbook for patients and their experience. |
| Marfan Association UK |
| The support association in the UK for this genetic condition which can affect the heart, eyes and connective tissue. |
| National Marfan Foundation |
| Providing accurate and timely information about the disorder to patients, family members and physicians. |
| 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. |
| Marfan-List |
| Information about an e-mail mailing list. Also includes links to other online support groups. |
| 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. |
| 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. |
| Stanford University Marfan Center |
| Research, testing and care for Marfan Syndrome and related connective tissue disorders, with a list of FAQs. |
| Life and Issues of Marfan's Syndrome |
| Personal site by which describes the pathology and gives a bit of advice. |
| Slovak Marfan Association |
| The association provides a network of patients, relatives and doctors in Slovakia, informs and helps patients to improve the medical care. |
| 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. |
| 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. |
| International Federation of Marfan Syndrome Organizations |
| A global information center providing links to Organizations around the world. |
| 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. |
| Marf Kids Club |
| Includes short stories on multiple kids with the disease along with a link to a Marfan Web Ring. |
| eCureMe.com -- Marfan's Syndrome |
| Description, symptoms, diagnoses, treatment and other information with a couple of similar disorders for comparison. |
| Congenital Heart: Marfan's Disease - Yale |
| Sole discussion of the heart issues and includes some video footage of echocardiograms and other heart studies. |
| Univ. of Washington - Marfan Syndrome |
| What the disease is and includes the impacts on daily life. |
| MFS Type 1 Fibrillin Gene |
| A comprehensive site including major resources listed as well as genetic information. |
| MedicineNet.com - Marfan Syndrome |
| A Question-Answer format page of information. |
| Health Supervision for Children with Marfan Syndrome |
| Includes symptoms as well as how to deal with learning one has it. |
| Polish Marfan Association |
| General information including dealing with pregnancy with the disease. Also has contact information for the association and links to other organizations. |
| 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. |
| 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. |
| Central Ohio Support Group |
| Focuses on the support group with links to information about the disease. Includes a calendar of events for meetings. |
| 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. |
| 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. |
| 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 |
| Theresa E. Pageau - A Memorial Tribute |
| A tribute to a patient with this disease accompanied by information and links related to donating. |
| A Diary about Marfan's |
| Marfan's patients diary of the diseases events in her life. Includes a list of links. |
| 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. |
| Awareness |
| Intended to raise awareness of this disease. |
| MyDiseaseDex - Marfan Syndrome |
| An overview including terms and books associated with Marfan's. |
| 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. |
| 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 Syndrome |
| Comprehensive guide to this connective tissue disease. |
| Family Practice Notebook: Marfan's Syndrome |
| An outline of the disease with links to more information on the major symptoms. |