Language: English
Referral Letter and Features Chart
We created a template referral letter for you to use to simplify the process when you are referring a patient to a specialist for further evaluation or testing for the diagnosis of Marfan syndrome or a related disorder. The letter makes it easy for you to note the features you observed that raise your suspicion of these disorders.
Loeys-Dietz Syndrome Emergency Alert Card
Download the Loeys-Dietz Syndrome Foundation's Emergency Alert Card, as well as watch a short instructional video we put together to show exactly how to fill out and fold this card.
Hypermobile Ehlers-Danlos
Hypermobile Ehlers-Danlos is one of six different types of Ehlers-Danlos syndromes, and it is the most common. Hypermobile Ehlers-Danlos is a connective tissue disorder that predominantly affects the skeletal system. It is characterized by loose joints, often associated with chronic (long-term) joint pain. What other names do people use for Hypermobile Ehlers-Danlos? What are the […]
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 […]
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