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Decoding Genetic Insights: Navigating Possible Test Results
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.
Tags: Caregivers, Patients & Families
Physical Activity Resource
Exercise & Physical Activity With the right guidance, children and adults living with Marfan syndrome, Loeys-Dietz syndrome (LDS), or Vascular Ehlers-Danlos syndrome (VEDS) can — and should — safely include movement and exercise in their daily lives. Our latest resources focus in part on shared decision making. Because recommendations are individualized, shared decision-making is the […]
Tags: Marfan Syndrome , Caregivers, Patients & Families
The Role of Genetic Testing in the Diagnosis of Marfan Syndrome
For years, geneticists and cardiologists have taken pride in their ability to identify individuals with Marfan syndrome based on clinical assessment alone, and have minimized a role for genetic testing in the diagnosis. Once the gene FBN1 was found to be the cause of Marfan syndrome, testing was undertaken to determine the role of genetic testing in […]
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