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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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.
Les Yeux Et Le Syndrome De Marfan
Le syndrome de Marfan et certaines maladies apparentées peuvent impacter les yeux de nombreuses façons, en entraînant par exemple un déplacement du cristallin et en créant d’autres problèmes oculaires qui peuvent altérer la vision. À l’exception du déplacement du cristallin, ces problèmes oculaires existent également dans la population générale. C’est pourquoi les médecins ne réalisent […]
Tags: Marfan Syndrome , Patients & Families
Emergency Preparedness Kit
Emergency Preparedness Kit This kit is your tool to help you be prepared in the event of an emergency. We suggest putting the completed packet in a brightly colored envelope or folder so it is easy to find. At home, keep it near the door so it is handy for Emergency Medical Services (EMS) and […]
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.