Know the Signs, Fight for Victory
Bicuspid aortic valve (BAV) is a defect of the aortic valve that is present at birth. The aortic valve allows oxygen-rich blood to flow from the heart to the aorta. The aorta is the major blood vessel that brings blood to the body. Normally, there are three valve flaps (leaflets) in the aortic valve. In […]
In order to have better outcomes in the emergency department for people with genetic aortic and vascular conditions, a Patient Care Coordination Note (PCCN), can provide triage nurses and ER physicians, with life-saving information for these rare conditions. This patient care coordination note appears in the upper left hand corner in red, when you open […]
A coordinated clinic is the best place to go for Marfan syndrome and related disorders care. A coordinated clinic provides expertise in all Marfan-related specialties: genetics, cardiology (heart), ophthalmology (eyes), and orthopedics (bones and joints). Download our clinic directory, which is comprised of institutions around the country that treat Marfan syndrome and related conditions. We […]
Have a hard time finding pants with long enough legs? Can’t find shoes that fit? Your Marfan Foundation Teen Council came up with the idea for this resource just for you! If you have any suggestions of brands/ stores that should be added, please send them to us at staff@marfan.org. This guide provides information about brands […]
If you were recently diagnosed with Marfan syndrome or if you have known about it for years, there are probably hundreds of thoughts, questions, and concerns rushing through your head. On one hand, there is a whole new world of medical information to learn. On the other hand, there is your life as a teen. […]
Register for your Walk for Victory by following the simple steps in our registration guide. Whether you join as an individual or create a team, we look forward to seeing you soon!
Use this form to request printed versions of our fact sheets, brochures, and booklets.