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
Know the Signs of an Aortic Aneurysm and Dissection
People with Marfan syndrome are at up to 250 times greater risk of aortic dissection (a tear or rupture between layers of the aortic wall) than the general population. That’s why it’s important to know the signs of an aortic dissection and what to do. Symptoms of aortic aneurysm may be related to the location, […]
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
Parent Toolkit
This Parent Toolkit is a resource for parents of children with Marfan, Loeys-Dietz, VEDS, or another genetic aortic condition. It offers resources to help you deal with your child’s school, doctors, and healthcare, and guide you to additional resources for information and support.
Tags: Loeys-Dietz Syndrome, Marfan Syndrome, VEDS , Caregivers
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.