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
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.
A Month of Gratitude & Self-Care 2026
During Mental Health Awareness Month, we’re sharing some quick ideas for focusing on you.
Tags: All
Tags: Marfan Syndrome , Caregivers, 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.