When you’re recovering from surgery or having a pain flare-up, people often ask how they can help. But when you’re not feeling well, it’s hard to know what to say. These worksheets are designed for adults, teens, and kids to communicate the best ways to support them through medical events.
Related Resources
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
KIT DE PRÉPARATION AUX URGENCES
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.
Info on FBN1 Testing
Findings in an FBN1 screening that should be considered causal in making the diagnosis of Marfan syndrome.
Tags: All , Healthcare Professionals
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.