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
Les Poumons Et Le Syndrome De Marfan
Les personnes atteintes du syndrome de Marfan et de certaines maladies apparentées sont nombreuses à présenter des complications pulmonaires ou des problèmes au niveau de leurs poumons. Si vous souffrez du syndrome de Marfan, il est important que vous consultiez un pneumologue (un médecin spécialiste des poumons) si vous soupçonnez un problème pulmonaire, quel qu’il […]
Tags: Marfan Syndrome , Patients & Families
Notfall-Bereitschafts Paket
Dieses Kit ist Ihr Werkzeug, um im Notfall vorbereitet zu sein. Wir empfehlen, das fertige Paket in einen bunten Umschlag oder Ordner zu legen, damit es leicht zu finden ist.
Stimulant Use in Children with Genetic Aortic and Vascular Conditions
A concise, evidence-based clinical guidance document from the Marfan Foundation in collaboration with Luciana Young, MD, offering families, pediatricians, and cardiologists practical information on evaluating and treating ADHD in children with genetic aortic and vascular conditions such as Marfan syndrome, Loeys-Dietz syndrome, and Vascular Ehlers-Danlos syndrome. This article is intended for educational purposes only and […]
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