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
Family Health History
Your family health history is a collection of health information about you and your close relatives. It contains information about disorders, diseases, and health problems that you and your children may be at risk for now or in the future. Most important, it can also help your doctors as they consider whether or not you […]
Tags: Marfan Syndrome , Patients & Families
Ossa E Articolazioni Nella Sindrome di Marfan
SINDROME DI MARFAN La sindrome di Marfan causa frequentemente problemi alle ossa e alle articolazioni, che infatti sono spesso le prime caratteristiche che portano a sospettare la presenza della sindrome e a cercare una diagnosi. Queste caratteristiche (chiamate caratteristiche scheletriche) si manifestano quando le ossa crescono eccessivamente oppure i legamenti (il tessuto connettivo che tiene […]
Tags: Marfan Syndrome , Patients & Families
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
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.