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.
Related Resources
The Eyes in Marfan Syndrome
Marfan syndrome and some related disorders can affect the eyes in many ways, causing dislocated lenses and other eye problems that can affect your sight. Except for dislocated lenses, these eye problems also occur in the general population, which is why doctors do not always realize they are caused by Marfan syndrome. It is important […]
Tags: Marfan Syndrome , Patients & Families
How to Ask for Help Guides
When you’re recovering from surgery or having a pain flare-up, people often ask how they can help. But when you’re not feeling well, it’s hard to know what to say. These worksheets are designed for adults, teens, and kids to communicate the best ways to support them through medical events.
Les Os Et Les Articulations Et Syndrome De Marfan
Le syndrome de Marfan est souvent à l’origine de problèmes au niveau des os et des articulations. Ce sont en réalité souvent ces caractéristiques qui amènent en premier une personne à soupçonner un syndrome de Marfan et à chercher à obtenir un diagnostic. Ces caractéristiques (désignées caractéristiques squelettiques) se manifestent lorsque les os dépassent la […]
Tags: Marfan Syndrome , Patients & Families
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