This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
Related Resources
Knochen Und Gelenke Beim Marfan-Syndrom
Das Marfan-Syndrom verursacht häufig Probleme mit Knochen und Gelenken. In der Tat sind dies oft die ersten Merkmale, die einen Verdacht auf das Marfan-Syndrom erwecken und eine Person zu einem Arztbesuch bewegen, um eine Diagnose stellen zu lassen. Zu diesen Skelettmerkmalen kommt es, wenn die Knochen übermäßig lang werden oder die Bänder (das Bindegewebe, das […]
Tags: Marfan Syndrome , Patients & Families
Teeth in Marfan Syndrome
Many people with Marfan syndrome and some related disorders have narrow jaws and high-arched palates, which can create dental and orthodontic problems. In addition, people with mitral valve prolapse and artificial heart valves are at risk for endocarditis (infection of the heart and heart valves) when they have dental work, and should follow recommendations for […]
Tags: Marfan Syndrome , Patients & Families
Summary of Diagnostic Criteria
The diagnosis of Marfan syndrome relies on a set of defined clinical criteria (the Ghent nosology) developed to facilitate accurate recognition of the syndrome and improve patient management and counseling.
Tags: All , Healthcare Professionals
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.