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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Virtual Medical Symposium Series
Prepare for Victory: Virtual Medical Symposium Series is a webinar series that will arm you with the latest diagnosis and treatment information from the experts.
Marfan Syndrome Diagnosis
Marfan syndrome is a serious condition, and some complications are potentially life-threatening. Advances in medical care have made it possible for people with Marfan syndrome to live a normal lifespan if they are diagnosed and treated properly. What is Marfan syndrome? What causes Marfan syndrome? How is Marfan syndrome inherited? What are the features of […]
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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 […]
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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.