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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Shprintzen-Goldberg Syndrome Fact Sheet
Shprintzen-Goldberg Syndrome is a condition that affects many parts of the body. People who have this syndrome have a combination of unique facial features and skeletal and neurological abnormalities. Shprintzen-Goldberg syndrome is caused by genetic changes (mutations) in a gene that contributes to the formation of connective tissue. How prevalent is Shprintzen-Goldberg syndrome? What are […]
Diagnosi Della Sindrome Di Marfan
La sindrome di Marfan è una malattia grave e alcune complicazioni sono potenzialmente letali. Grazie ai progressi dell’assistenza medica, le persone affette da sindrome di Marfan possono avere una durata di vita normale se la malattia viene diagnosticata e trattata in modo appropriato.
Tags: Marfan Syndrome , Patients & Families
Emergency Preparedness Kit
Emergency Preparedness Kit This kit is your tool to help you be prepared in the event of an emergency. We suggest putting the completed packet in a brightly colored envelope or folder so it is easy to find. At home, keep it near the door so it is handy for Emergency Medical Services (EMS) and […]
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.