Nlogs and Personal Sites about the Marfan Syndrome

Personal Websites, Blogs Or Forums

http://www.marfan.net.au/

This is an Australian personal website in started on Aug 4, 2003 to provide support for people suffering with Marfan Syndrome. The creator has dedicated the site to her son, Richard, who died of aorta dissection in 1997 at 18 years old. She and her husband were unaware of Marfan Syndrome at the time.

The site contains a photo gallery, online enquiry section, many links and an online discussion forum.

http://marfanlife.net/home/

MarfanLife.net is operated by Jeanette Navia who has Marfan Syndrome.
The site includes:
• Marfan Life forum, where people discuss issues they have with Marfan syndrome or just get to know each other openly on a public bulletin board
• Marfan-List, the longest-running email discussion group for Marfan syndrome. Posts are not made public.
• Marfan news blog, which has links to current news articles in the press
• Marfan Syndrome wiki, with information provided by users for other users about living with the Marfan syndrome. Also includes lists of online Marfan syndrome groups, blogs and websites of people with Marfan syndrome. Come join the wiki and add to the knowledge!

http://health.groups.yahoo.com/group/marfans_support_and_chat/

This site is to help all those who are afflicted with Marfan Syndrome, or are a family member of someone who is afflicted with Marfan syndrome. It should be used to help keep each other informed on the new areas of progress being made through research and technology. "Let us help each other through the rough spots of having the disorder. This group is a wonderful caring bunch of individuals. We meet on Monday for day chats from 2 - ? PM eastern time and on Sunday (7 PM), Wednesday and Friday for night chat from 8 -? PM eastern time. "

http://www.io.com/~cortese/marfan/

This site was created by Janis Cortese who has Marfan Syndrome. She created the site to educate people about the disorder so they will know how to recognize it and what it’s like to life with it. The site is very comprehensive and contains detailed information about all aspects of the disorder. A FAQ provides answers to common questions.

http://www.jrmarfan58.com/

This site was created by a 47 year old man named Jon who lives in Boston and has Marfan Syndrome. The website is an outline of his life and research that he has conducted over the last 6 years. It also contains a fact sheet and links.

http://www.marfanssyndrome.net/

This site was created by a college student named Michael who was diagnosed with Marfan Syndrome in 1996. His site contains information about the disorder and links to other sites, as well as Marfan blogs and forums.

http://marfanlife.net/forum/

The Marfan Life Forum is a public bulletin board where people living with Marfan Syndrome can discuss the disorder and support each other. The board currently has 412 registered users who have posted a total of 1891 articles.

http://www.geocities.com/mikkidawn1/index1.html

This website was created by a 28 year old single mother of 3 who has Marfan Syndrome. 2 of her children also have the disorder and doctors are in the process of confirming whether her youngest son is also affected. The site describes a bit about their life and how they have dealt with Marfan Syndrome.

http://www.forevertheresa.net/

This site is dedicated to a woman named Theresa E. Pageau who died in 2001 when she was 32 due to complications from Marfan Syndrome. The website was created by her boyfriend and contains information about the disorder as well as links to other organizations.

http://marfanlife.net/lists/

Marfan List began in May, 1997 and there are currently 510 subscribers worldwide. The site is the longest-running email discussion group for Marfan Syndrome and posts are not made public. The group normally 2-20 messages a day.

Last updated: Feb 03, 2010

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