The American College of Medical Genetics has a medical genetics database you can use to find a knowledgeable geneticist in your area. Helpful search terms include: connective tissue, bone/skeletal disorders, cardiovascular/connective tissue, adult congenital heart disease, adult medical genetics, pediatric genetics, and genetics counseling.
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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.
Ectopia Lentis Syndrome Fact Sheet
In some families, dislocation of the lens of the eye (ectopia lentis) is the predominant feature that passes from generation to generation. Sometimes, this occurs along with some of the skeletal (bone and joint) features of Marfan syndrome. This combination of features is called ectopia lentis syndrome. What are the characteristics of ectopia lentis syndrome? […]
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