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 Sunday (7pm?), Wednesday and Friday for night chat from 8-?? pm eastern time. Other chats added as desired, including kid and teen supervised chats. We hope to see you there soon!
Hi Becky, My name is Larie ( Ree for short). We have several fam's in the Portland area and they are starting to get ready for a National Marfan Foundation
Becky, I'm forwarding this, it looks like it just went to the moderators. We're glad you found us and we will try to help you through questions, ups and down
hi i'm a 33 year old woman, i was diagnosed with marfan syndrome when i was 4. i'm looking for others to chat too about how they feel, i'm in scotland, thanks
Hi Jessi-My daughter is 18 and she has Marfans too. I have several kids, 2 definately have Marfans, the others are suspected of having it.My kids also have