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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Tags: All , Caregivers, Patients & Families
La Excoliosis y el Síndrome de Marfan
La escoliosis es una curvatura de la columna hacia un lado. Aproximadamente 6 de cada 10 personas con síndrome de Marfan tienen escoliosis, pero solamente 1 de cada 3 necesitan tratamiento médico para ella. Una persona necesita tratamiento cuando tiene dolor de espalda, cambios importantes en su postura y la forma de su cuerpo o […]
Tags: Marfan Syndrome , Patients & Families
A Guide to Marfan Syndrome and Related Disorders
This book was created to help readers understand the basics of Marfan syndrome diagnosis and treatment, as well to provide guidance on the lifestyle and practical issues commonly encountered by people with Marfan syndrome or a related disorder. Perhaps you have recently been diagnosed with Marfan syndrome—what should you expect? Or your child’s pediatrician has […]
Tags: Marfan Syndrome , Patients & Families
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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.