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
Overview of Cardiac Management in Marfan Syndrome
Overview of Cardiac Management in Marfan Syndrome Aortic dissection is the major cause of premature morbidity and mortality in Marfan syndrome. Aortic root aneurysm or dissection and ectopia lentis are cardinal features of Marfan syndrome based on the 2010 Gent nosology. For the full diagnostic criteria, please visit MarfanDX.org. Cardiac features that may be seen […]
I Polmoni Nella Sindrome Di Marfan
Molte persone affette da sindrome di Marfan o da alcune malattie correlate manifestano complicazioni polmonari, ovvero problemi ai polmoni. È importante che chi soffre di sindrome di Marfan si rivolga a uno pneumologo (uno specialista dei polmoni) se sospetta di avere problemi ai polmoni.
Tags: Marfan Syndrome , Patients & Families
Datos Sobre el Síndrome de Marfan
El Síndrome de Marfan es un trastorno del tejido conectivo. El tejido conectivo es el que hace que todas las partes del cuerpo se mantengan en su lugar y ayuda a controlar el crecimiento del cuerpo. Como el tejido conectivo se encuentra en todo el cuerpo, las características del Síndrome de Marfan pueden ocurrir en […]
Tags: Marfan Syndrome , Patients & Families
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.