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
Skin in Marfan Syndrome
Stretch marks on the skin (striae atrophicae) may occur in anyone, particularly as a result of rapid growth during adolescence, pregnancy or marked weight gain or loss. People with Marfan syndrome are prone to develop stretch marks, often at an early age and without weight change. The marks tend to appear in body parts subject […]
Tags: Marfan Syndrome , Patients & Families
Tags: All , Caregivers, 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
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.