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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Family Planning and Pregnancy
Decisions about family planning can be difficult and very emotional when one of the prospective parents has a genetic disorder, such as Marfan syndrome. Before making any decisions, parents should understand the many options now available, as well as the potential risks to the child and the mother. A genetic counselor or the nurse in […]
Les Poumons Et Le Syndrome De Marfan
Les personnes atteintes du syndrome de Marfan et de certaines maladies apparentées sont nombreuses à présenter des complications pulmonaires ou des problèmes au niveau de leurs poumons. Si vous souffrez du syndrome de Marfan, il est important que vous consultiez un pneumologue (un médecin spécialiste des poumons) si vous soupçonnez un problème pulmonaire, quel qu’il […]
Tags: Marfan Syndrome , Patients & Families
Kit Di Preparazione Alle Emergenze
Questo kit è il tuo strumento per aiutarti a essere preparato in caso di emergenza. Ti consigliamo di inserire il pacchetto completato in una busta o in una cartella dai colori vivaci in modo che sia facile da trovare. A casa, tienilo vicino alla porta in modo che sia utile per i servizi medici di emergenza (EMS) e magari attaccalo al muro al lavoro. Fornisci anche una copia di questo pacchetto alla tua procura e procura sanitaria.
Know the signs.
Fight for victory.
Join us in the fight for victory over Marfan syndrome and related conditions and help us create a brighter future for everyone living with these conditions.