Das Marfan-Syndrom und andere verwandte Erkrankungen können verschiedene Veränderungen im Bereich des Auges hervorrufen, wie z. B. verlagerte Linsen und andere Augenprobleme, die die Sicht beeinträchtigen können. Mit Ausnahme von verlagerten Linsen können diese Augenprobleme auch in der Allgemeinbevölkerung auftreten, weshalb Ärzte nicht immer erkennen, dass diese Veränderungen durch Marfan-Syndrom verursacht wurden. Es ist wichtig zu wissen, dass diese Probleme, auch wenn sie in der Allgemeinbevölkerung auftreten, sehr viel häufiger bei Patienten mit Marfan-Syndrom vorkommen.
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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
La Pelle Nella Sindrome di Marfan
Le smagliature della pelle (striae distensae) possono manifestarsi in qualsiasi persona, in particolare a seguito di una crescita rapida durante l’adolescenza, durante la gravidanza o in caso di un importante aumento o calo di peso. Chi soffre di sindrome di Marfan ha una maggiore tendenza a sviluppare smagliature, spesso in giovane età e senza che […]
Tags: Marfan Syndrome , Patients & Families
Career Development Award
The Career Development Award will support two-year $100,000 grants ($50,000 per year) in basic, translational, or clinical research studying any discipline involved in Marfan syndrome, Loeys-Dietz syndrome, Vascular Ehlers-Danlos syndrome, and other related conditions. This grant program is designed to support investigators early in their career to derive preliminary data in a key concept area […]
Tags: All , Healthcare Professionals, Researchers
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