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
Heart and Blood Vessels
People with Marfan syndrome frequently have problems with their heart and blood vessels. Sometimes, these problems are very serious. The most common complication affects the aorta (the main blood vessel carrying blood from the heart to the rest of the body). Heart valves may be affected as well. Less often, blood vessels other than the […]
Tags: Marfan Syndrome , Patients & Families
Directives Relatives à L’activité Physique
La pratique régulière d’activités physiques améliore tant le bien-être physique que psychologique et peut s’intégrer en toute sécurité aux habitudes des personnes atteintes du syndrome de Marfan. Ces personnes sont par conséquent encouragées à adapter les mesures sanitaires qui les protègent des caractéristiques de Marfan qui pourraient s’aggraver et des affections qui font simplement partie […]
Tags: Marfan Syndrome , Patients & Families
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 […]
Tags: Marfan Syndrome , Patients & Families
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.