Only 25 percent of patients with Marfan syndrome surveyed by the National Marfan Foundation (NMF) said that their primary care doctor – their internist, family doctor or pediatrician – was the first to suspect that they have the potentially life-threatening condition. Alarmingly, 12 percent of survey respondents indicated that they were diagnosed after the death of a family member from Marfan syndrome. Click here  for full article and study results. 

The Canadian Marfan Association will be distributing the Canadian version of the survey to our members and friends soon. These studies help us to increase awareness and advocate for patient care. Thank you for all your support!