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
Die Zähne Beim Marfan-Syndrom
Viele Menschen mit Marfan-Syndrom und einigen anderen verwandten Erkrankungen haben einen schmalen Kiefer und einen hochgewölbten Gaumen, was zu Zahn- und Kieferproblemen führen kann. Darüber hinaus besteht bei Patienten mit Mitralklappenprolaps und künstlichen Herzklappen bei Zahnbehandlungen das Risiko einer Endokarditis (Infektion des Herzens und der Herzklappen), weshalb die Empfehlungen zur Endokarditisprävention (Prophylaxe) zu beachten sind.
Tags: Marfan Syndrome , Patients & Families
Mental Health Resources
While most people with chronic conditions focus on their physical health, mental health is often ignored. Having a connective tissue condition isn’t easy, so give your mind the TLC it needs.
Tags: All , Caregivers, Patients & Families
Ehlers-Danlos Syndrome Hypermobility
Ehlers-Danlos Syndrome hypermobility type is one of six different types of Ehlers-Danlos syndromes, and it is the most common. Ehlers-Danlos syndrome hypermobility type is a connective tissue disorder that predominantly affects the skeletal system. It is characterized by loose joints, often associated with chronic (long-term) joint pain. What other names do people use for Ehlers-Danlos […]
Know the signs.
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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.