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
Hypermobile Ehlers-Danlos
Hypermobile Ehlers-Danlos is one of six different types of Ehlers-Danlos syndromes, and it is the most common. Hypermobile Ehlers-Danlos 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 Hypermobile Ehlers-Danlos? What are the […]
Sindrome Di Marfan Impariamo A Conoscerla
La sindrome di Marfan è una malattia genetica potenzialmente letale che causa alterazioni del tessuto connettivo dell’organismo. Conoscere i segni della sindrome di Marfan, avere una diagnosi corretta e ricevere il trattamento necessario può permettere a chi soffre di questa sindrome di condurre una vita lunga e soddisfacente.
Tags: Marfan Syndrome , Patients & Families
Systemic Calculator Conditions (GenTAC)
Clinical manifestations of MFS in other organ systems were critically evaluated for their specificity and diagnostic utility based on expert opinion and the available literature. Several of the “minor” criteria from the old Ghent nosology were eliminated, but the most selective systemic features were included in the “systemic score”.
Tags: All , Healthcare Professionals
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