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
Sindrome Di Marfan Impariamo A Conoscerla
La sindrome di Marfan è una malattia genetica potenzialmente letale che causa alterazioni del tessuto connettivo dell’organismo. Conoscere i segni della sindrome di Marfan, avere una diagnosi corretta e ricevere il trattamento necessario può permettere a chi soffre di questa sindrome di condurre una vita lunga e soddisfacente.
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.