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
La Peau Et Le Syndrome De Marfan
Des vergetures (striae atrophicae) peuvent apparaître sur la peau de quiconque, en particulier à la suite d’une croissance rapide pendant l’adolescence, d’une grossesse ou d’une perte ou prise de poids importante. Les personnes atteintes du syndrome de Marfan sont sujettes à la formation de vergetures, souvent à un âge précoce et sans changement de poids. […]
Tags: Marfan Syndrome , Patients & Families
Cirugía Para Reparar la Raiz Aortica en el Síndrome de Marfan
La dilatación de la raíz de la aorta es cuando el segmento de la aorta más cercano al corazón se encuentra agrandado. Este es un problema muy serio y muy común para personas con síndrome de Marfan. Con frecuencia el tratamiento para cuando la raíz aortica alcanza cierto tamaño es una cirugía; si la raíz […]
Tags: Marfan Syndrome , Patients & Families
Teens and Marfan Syndrome
If you were recently diagnosed with Marfan syndrome or if you have known about it for years, there are probably hundreds of thoughts, questions, and concerns rushing through your head. On one hand, there is a whole new world of medical information to learn. On the other hand, there is your life as a teen. […]
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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.