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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
Sindrome Di Marfan Impariamo A Conoscerla
La sindrome di Marfan è una malattia genetica potenzialmente letale che causa alterazioni del tessuto connettivo dell’organismo. Conoscere i segni della sindrome di Marfan, avere una diagnosi corretta e ricevere il trattamento necessario può permettere a chi soffre di questa sindrome di condurre una vita lunga e soddisfacente.
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
Tags: All , 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.
