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
Genetic Testing and Marfan Syndrome
Genetic testing for mutations in fibrillin-1 (FBN1) and other genes has become an important and reliable option to aid in the diagnosis of Marfan syndrome and related disorders. However, the results of genetic testing for the diagnosis of disorders are not always straightforward. Therefore, working with a medical geneticist (a physician with training in genetics) […]
Tags: Marfan Syndrome , Patients & Families
Familienplanung Und Schwangerschaft
Entscheidungen über die Planung einer Familie können schwierig und emotional sein, wenn eines der zukünftigen Elternteile eine genetische Erkrankung wie das Marfan-Syndrom hat. Bevor eine Entscheidung getroffen wird, sollten sich Eltern über die vielen Möglichkeiten informieren, die heutzutage zur Verfügung stehen, sowie über die möglichen Risiken für Mutter und Kind. Ein genetischer Berater oder die […]
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
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.