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
Mental Health Resources
While most people with chronic conditions focus on their physical health, mental health is often ignored. Having a connective tissue condition isn’t easy, so give your mind the TLC it needs.
Tags: All , Caregivers, Patients & Families
Notfall-Bereitschafts Paket
Dieses Kit ist Ihr Werkzeug, um im Notfall vorbereitet zu sein. Wir empfehlen, das fertige Paket in einen bunten Umschlag oder Ordner zu legen, damit es leicht zu finden ist.
Tags: Marfan Syndrome , Caregivers, 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.