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
Tags: Marfan Syndrome
Marfan DX
We compiled the 2010 Revised Ghent Nosology for Marfan Syndrome into a simple diagnostic tool to put the updated criteria right in your hands. It is designed for all healthcare professionals involved in the diagnosis of Marfan syndrome, including general practitioners and specialists such as pediatricians, cardiologists, orthopedists, ophthalmologists, and geneticists.
Tags: All , Healthcare Professionals
Patient Care Coordination Instructions
In order to have better outcomes in the emergency department for people with genetic aortic and vascular conditions, a Patient Care Coordination Note (PCCN), can provide triage nurses and ER physicians, with life-saving information for these rare conditions. This patient care coordination note appears in the upper left hand corner in red, when you open […]
Tags: All, VEDS , Healthcare Professionals, 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.