Ce kit est votre outil pour vous aider à être prêt en cas d’urgence. Nous vous suggérons de placer les documents dûment remplis dans une enveloppe ou un dossier de couleur vive afin qu’ils soient faciles à trouver. À la maison, gardez-les près de la porte pour qu’ils soient à portée de main des services médicaux d’urgence (SMU) et éventuellement au travail, accrochez-les au mur.
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Tags: Marfan Syndrome , Patients & Families
Parent Toolkit
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.
Tags: Loeys-Dietz Syndrome, Marfan Syndrome, VEDS , Caregivers
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 […]
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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.