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
Need-to-know Information for the School Nurse
As the health needs of schools have changed since 1902, the role of school nursing has evolved to meet those changing needs. The school nurse plays an important leadership role in prevention of illness or injury, identification of medical problems through screening programs, and overall health maintenance. This is particularly important when a student has […]
Tags: Marfan Syndrome , Caregivers, Patients & Families
Die Augen Beim Marfan-Syndrom
Das Marfan-Syndrom und andere verwandte Erkrankungen können verschiedene Veränderungen im Bereich des Auges hervorrufen, wie z. B. verlagerte Linsen und andere Augenprobleme, die die Sicht beeinträchtigen können. Mit Ausnahme von verlagerten Linsen können diese Augenprobleme auch in der Allgemeinbevölkerung auftreten, weshalb Ärzte nicht immer erkennen, dass diese Veränderungen durch Marfan-Syndrom verursacht wurden. Es ist wichtig […]
Tags: Marfan Syndrome , Patients & Families
Tags: Marfan Syndrome , Caregivers, 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.