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
Summary of Diagnostic Criteria
The diagnosis of Marfan syndrome relies on a set of defined clinical criteria (the Ghent nosology) developed to facilitate accurate recognition of the syndrome and improve patient management and counseling.
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Loeys-Dietz Syndrome
Loeys-Dietz syndrome is a genetic disorder of connective tissue. Because connective tissue is found throughout the body, Loeys-Dietz syndrome features can occur in the heart, blood vessels, bones, joints, skin, and internal organs, such as the intestines, spleen, and uterus. Some Loeys-Dietz syndrome features are easy to see. Others features, such as heart and blood […]
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.