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
Linee Guida Per L’Attività Fisica
L’attività fisica regolare migliora il benessere fisico e psicologico e può essere integrata in tutta sicurezza nella routine di chi soffre di sindrome di Marfan. Le persone affette da sindrome di Marfan sono pertanto incoraggiate ad adottare misure di salute che le proteggano dalle caratteristiche della sindrome che possono peggiorare e dalle malattie che fanno […]
Tags: Marfan Syndrome , Patients & Families
Bicuspid Aortic Valve
Bicuspid aortic valve (BAV) is a defect of the aortic valve that is present at birth. The aortic valve allows oxygen-rich blood to flow from the heart to the aorta. The aorta is the major blood vessel that brings blood to the body. Normally, there are three valve flaps (leaflets) in the aortic valve. In a person who […]
Z-Score Calculator for Children
For patients up to 25 years of age: utilizing systole, inner to inner edge measurement of the sinuses of valsalva according to personal communication from Steve Colan.
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.