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.
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Need-to-Know Information for the Teacher
Marfan syndrome is a life-threatening genetic disorder that causes some physical problems that can interfere with a student’s ability to perform in the classroom without modifications. These physical limitations cause many students living with the disorder to feel isolated and alone. We hope this guide enables educators to: Understand the basics of Marfan syndrome and […]
Tags: All, Marfan Syndrome , Caregivers, Patients & Families
Genetic Testing and Marfan Syndrome
Genetic testing for mutations in fibrillin-1 (FBN1) and other genes has become an important and reliable option to aid in the diagnosis of Marfan syndrome and related disorders. However, the results of genetic testing for the diagnosis of disorders are not always straightforward. Therefore, working with a medical geneticist (a physician with training in genetics) […]
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.