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Related Resources
Z-Score Calculator for Children
For patients up to 25 years of age: utilizing systole, inner to inner edge measurement of the sinuses of valsalva according to personal communication from Steve Colan.
Physical Activity Guidelines
Regular exercise improves both physical and emotional well-being and can be incorporated safely into the routine of people with Marfan syndrome. Therefore, they are encouraged to adapt health measures that protect them from Marfan features that can worsen and from medical conditions that are simply part of the aging process. With an early diagnosis, treatment, and lifestyle adaptations, many […]
Tags: Marfan Syndrome , Caregivers, Patients & Families
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
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.