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
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.
Parent Toolkit
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.
Tags: Loeys-Dietz Syndrome, Marfan Syndrome, VEDS , Caregivers
Know the signs.
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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.