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
Ossa E Articolazioni Nella Sindrome di Marfan
SINDROME DI MARFAN La sindrome di Marfan causa frequentemente problemi alle ossa e alle articolazioni, che infatti sono spesso le prime caratteristiche che portano a sospettare la presenza della sindrome e a cercare una diagnosi. Queste caratteristiche (chiamate caratteristiche scheletriche) si manifestano quando le ossa crescono eccessivamente oppure i legamenti (il tessuto connettivo che tiene […]
Tags: Marfan Syndrome , Patients & Families
Syndrome De Marfan: Les Faits Essentiels
Le syndrome de Marfan est une maladie génétique potentiellement mortelle qui touche le tissu conjonctif du corps. Reconnaître les signes du syndrome de Marfan, parvenir au diagnostic juste et recevoir le traitement nécessaire peuvent permettre aux personnes atteintes de vivre une existence longue et épanouie.
Tags: Marfan Syndrome , Patients & Families
Ectopia Lentis Syndrome Fact Sheet
In some families, dislocation of the lens of the eye (ectopia lentis) is the predominant feature that passes from generation to generation. Sometimes, this occurs along with some of the skeletal (bone and joint) features of Marfan syndrome. This combination of features is called ectopia lentis syndrome. What are the characteristics of ectopia lentis syndrome? […]
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.