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
Patient Care Coordination Instructions
In order to have better outcomes in the emergency department for people with genetic aortic and vascular conditions, a Patient Care Coordination Note (PCCN), can provide triage nurses and ER physicians, with life-saving information for these rare conditions. This patient care coordination note appears in the upper left hand corner in red, when you open […]
Tags: All, VEDS , Healthcare Professionals, Patients & Families
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.