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
Family Health History
Your family health history is a collection of health information about you and your close relatives. It contains information about disorders, diseases, and health problems that you and your children may be at risk for now or in the future. Most important, it can also help your doctors as they consider whether or not you […]
Tags: Marfan Syndrome , Patients & Families
Die Lunge Beim Marfan-Syndrom
Viele Patienten mit Marfan-Syndrom und einigen verwandten Erkrankungen haben Probleme mit ihrer Lunge. Wenn Sie das Marfan-Syndrom haben, ist es wichtig, dass Sie einen Pneumologen (einen Spezialisten für Lungenkrankheiten) aufsuchen, wenn Sie den Verdacht haben, dass Sie Probleme mit Ihrer Lunge haben.
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.