Understanding your genetic test results for conditions like Marfan, Loeys-Dietz, or VEDS can be challenging. Here’s a simple Q&A to help make sense of what your results may mean and what you might consider doing next.
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Walk for Victory Registration Guide
Register for your Walk for Victory by following the simple steps in our registration guide. Whether you join as an individual or create a team, we look forward to seeing you soon!
Tags: All , Patients & Families
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
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
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