La sindrome di Marfan è una malattia genetica potenzialmente letale che causa alterazioni del tessuto connettivo dell’organismo. Conoscere i segni della sindrome di Marfan, avere una diagnosi corretta e ricevere il trattamento necessario può permettere a chi soffre di questa sindrome di condurre una vita lunga e soddisfacente.
Related Resources
A Guide to Marfan Syndrome and Related Disorders
This book was created to help readers understand the basics of Marfan syndrome diagnosis and treatment, as well to provide guidance on the lifestyle and practical issues commonly encountered by people with Marfan syndrome or a related disorder. Perhaps you have recently been diagnosed with Marfan syndrome—what should you expect? Or your child’s pediatrician has […]
Tags: Marfan Syndrome , Patients & Families
Diagnostic Du Syndrome De Marfan
Le syndrome de Marfan est une maladie grave dont certaines complications peuvent être mortelles. Les progrès réalisés dans les soins médicaux permettent désormais aux personnes atteintes du syndrome de Marfan d’avoir une espérance de vie normale si elles reçoivent un diagnostic et un traitement adapté.
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
Know the signs.
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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.