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
Tags: Marfan Syndrome , Teens & Children
Walk for Victory Registration Guide
Register for your Walk for Victory by following the simple steps in our registration guide. Whether you join as an individual or create a team, we look forward to seeing you soon!
Tags: All , Patients & Families
COVID-19 Myths Busted
Professional Advisory Board Member Enid Neptune, MD, Johns Hopkins, addresses some of the myths around COVID-19.
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.