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Chirurgia Cardiaca
Le persone affette da sindrome di Marfan spesso hanno problemi al cuore e ai vasi sanguigni, a volte anche molto gravi. La complicazione più comune riguarda l’aorta (il vaso sanguigno che porta il sangue dal cuore al resto dell’organismo). Possono essere interessate anche le valvole cardiache. Più raramente sono colpiti vasi sanguigni diversi dall’aorta. È […]
Tags: Marfan Syndrome , Patients & Families
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 […]
Tags: All, VEDS , Healthcare Professionals, Patients & Families
The Role of Genetic Testing in the Diagnosis of Marfan Syndrome
For years, geneticists and cardiologists have taken pride in their ability to identify individuals with Marfan syndrome based on clinical assessment alone, and have minimized a role for genetic testing in the diagnosis. Once the gene FBN1 was found to be the cause of Marfan syndrome, testing was undertaken to determine the role of genetic testing in […]
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