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 the outpatient chart under snapshot and in some other views depending on how your EPIC is set. The PCCN can outline critical information to treat patients with rare conditions.
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Cirugía Para Reparar la Raiz Aortica en el Síndrome de Marfan
La dilatación de la raíz de la aorta es cuando el segmento de la aorta más cercano al corazón se encuentra agrandado. Este es un problema muy serio y muy común para personas con síndrome de Marfan. Con frecuencia el tratamiento para cuando la raíz aortica alcanza cierto tamaño es una cirugía; si la raíz […]
Tags: Marfan Syndrome , Patients & Families
Teens and Marfan Syndrome
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. […]
Loeys-Dietz Syndrome
Loeys-Dietz syndrome is a genetic disorder of connective tissue. Because connective tissue is found throughout the body, Loeys-Dietz syndrome features can occur in the heart, blood vessels, bones, joints, skin, and internal organs, such as the intestines, spleen, and uterus. Some Loeys-Dietz syndrome features are easy to see. Others features, such as heart and blood […]
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