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
Ehlers-Danlos Syndrome Hypermobility
Ehlers-Danlos Syndrome hypermobility type is one of six different types of Ehlers-Danlos syndromes, and it is the most common. Ehlers-Danlos syndrome hypermobility type is a connective tissue disorder that predominantly affects the skeletal system. It is characterized by loose joints, often associated with chronic (long-term) joint pain. What other names do people use for Ehlers-Danlos […]
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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.