Le syndrome de Marfan est une maladie génétique potentiellement mortelle qui touche le tissu conjonctif du corps. Reconnaître les signes du syndrome de Marfan, parvenir au diagnostic juste et recevoir le traitement nécessaire peuvent permettre aux personnes atteintes de vivre une existence longue et épanouie.
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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
Decoding Genetic Insights: Navigating Possible Test Results
Understanding your genetic test results for conditions like Marfan, Loeys-Dietz, or VEDS can be challenging. Here’s a simple Q&A to help make sense of what your results may mean and what you might consider doing next.
Tags: Caregivers, Patients & Families
Cómo Saber Si Tiene Síndrome de Marfan
Encuentre un doctor que esté familiarizado con el síndrome de Marfan. El síndrome de Marfan es raro y no todos los doctores lo conocen. Necesita buscar un doctor que conozca el el Sindrome de Marfan y que sepa ver la diferencia entre el Sindrome de Marfan y otros trastornos médicos que aparentan ser iguales.
Tags: Marfan Syndrome , Patients & Families
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.