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
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
Pianificazione Familiare e Gravidanza
Le decisioni in merito alla pianificazione familiare possono essere difficili ed emotivamente molto impegnative quando uno dei futuri genitori soffre di una malattia genetica, come la sindrome di Marfan. Prima di prendere qualsiasi decisione, i genitori devono conoscere le numerose opzioni attualmente disponibili nonché i rischi potenziali per la madre e il bambino. Un consulente […]
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.