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
Nervous System in Marfan Syndrome
The nervous system—the brain and spinal column—are surrounded by fluid contained in a membrane called the dura, which is primarily made up of connective tissue. The enlargement of this membrane (and sometimes the presence of cysts) is referred to as dural ectasia. Dural ectasia is present in more than 60 percent of people who have […]
Tags: Marfan Syndrome , Patients & Families
Differential Diagnosis
Important information on differential diagnosis and related disorders.
Tags: All , Healthcare Professionals
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.