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
Diagnosi Della Sindrome Di Marfan
La sindrome di Marfan è una malattia grave e alcune complicazioni sono potenzialmente letali. Grazie ai progressi dell’assistenza medica, le persone affette da sindrome di Marfan possono avere una durata di vita normale se la malattia viene diagnosticata e trattata in modo appropriato.
Tags: Marfan Syndrome , Patients & Families
Lungs in Marfan Syndrome
Many people with Marfan syndrome and some related disorders experience pulmonary complications, or problems with their lungs. If you have Marfan syndrome, it is important for you to see a pulmonologist (lung doctor) if you suspect that you have any problems with your lungs. What are the common types of lung problems in people with […]
Tags: Marfan Syndrome , 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.