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
Vascular Ehlers-Danlos Syndrome (VEDS)
Ehlers-Danlos syndrome is a group of connective tissue disorders that are characterized by unstable, hypermobile joints, loose, “stretchy” skin, and tissue fragility. It is caused by a defect in the connective tissue. The fragile tissues and skin and unstable joints found in Ehlers-Danlos syndrome are due to a gene mutation in collagen. What other names […]
Tags: VEDS , Patients & Families
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
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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.