Musings of a Marfan Mom

Research Opportunity


I’ve got some exciting news this Marfan Monday!!!

First of all, THIS WEDNESDAY you should tune in to The Doctors! Amy Yasbeck and Dr. Dianna Milewicz (the head of the National Marfan Foundation’s Professional Advisory Board) will be on the show to talk about aortic dissection and the new Ritter Rules of Aortic Health. Check your local listings to find when the show airs.

Second, I want to make sure you all know about the Boston University research study studying the impact of healthcare costs on people with Marfan syndrome. This study runs until May 1st, 2010. According to the NMF, “the study entails filling out a 25 minute anonymous survey regarding your own experiences with health care costs. You must be 18 years or older and diagnosed with Marfan syndrome or have a child diagnosed with Marfan syndrome to participate in this free survey.”

I don’t have any stake in the study, other than that I’m a person with Marfan and I hope the results of the study with positively affect healthcare policy. The more people who fill it out, the more accurate look researchers will be able to get.

Here is the invitation to participate, the letter to participants, and the survey itself.

Again, you or your child must have a diagnosis of MARFAN, not a related disorder. Participants from outside the United States are welcome.

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