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.
Related Resources
Know the Signs of an Aortic Aneurysm and Dissection
People with Marfan syndrome are at up to 250 times greater risk of aortic dissection (a tear or rupture between layers of the aortic wall) than the general population. That’s why it’s important to know the signs of an aortic dissection and what to do. Symptoms of aortic aneurysm may be related to the location, […]
Parent Toolkit
This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
Tags: Loeys-Dietz Syndrome, Marfan Syndrome, VEDS , Caregivers
KIT DE PRÉPARATION AUX URGENCES
Ce kit est votre outil pour vous aider à être prêt en cas d’urgence. Nous vous suggérons de placer les documents dûment remplis dans une enveloppe ou un dossier de couleur vive afin qu’ils soient faciles à trouver. À la maison, gardez-les près de la porte pour qu’ils soient à portée de main des services médicaux d’urgence (SMU) et éventuellement au travail, accrochez-les au mur.
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.