Know the Signs, Fight for Victory
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.
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 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 […]
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 (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 […]
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