Language: English
Parent Toolkit
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.
ACMG Directories
The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congenital heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
Info on FBN1 Testing
Findings in an FBN1 screening that should be considered causal in making the diagnosis of Marfan syndrome.
Differential Diagnosis
Important information on differential diagnosis and related disorders.
Request Materials
Use this form to request printed versions of our fact sheets, brochures, and booklets.
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