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
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 […]
Chirurgia Cardiaca
Le persone affette da sindrome di Marfan spesso hanno problemi al cuore e ai vasi sanguigni, a volte anche molto gravi. La complicazione più comune riguarda l’aorta (il vaso sanguigno che porta il sangue dal cuore al resto dell’organismo). Possono essere interessate anche le valvole cardiache. Più raramente sono colpiti vasi sanguigni diversi dall’aorta. È […]
Tags: Marfan Syndrome , Patients & Families
Tags: Marfan Syndrome , 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.