Language: English
Recommended Criteria for Development of a Marfan Clinic
The diagnosis, evaluation, and management of Marfan syndrome and related conditions require health practitioners from multiple disciplines with specialized knowledge, skills, and experience in heritable disorders of connective tissue. Patients and families are best served in clinics with demonstrated interest and expertise in this field.
Bicuspid Aortic Valve
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 […]
Patient Care Coordination Instructions
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 […]
Directory of Medical Institutions (Clinic Directory)
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 […]
Marfan Fashion Resources
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 […]
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