About the Foundation

Our History

The Coarctation of the Aorta Foundation is a 501 (c) (3) not for profit organization with the purpose of connecting children, adults and families who have been affected by the congenital heart condition called Coarctation of the Aorta. Because coarctation is considered to be a “moderate” heart defect there has been less advocacy and patient awareness of long-term follow-up and outcomes. We want to ensure that all COA survivors have long and healthy life.

After a successful coarctation repair, many parents and patients believe that the problem is fixed forever.  However, the correct term that more sophisticated centers and physicians use is “fixed but not cured.”  This means that even after a successful repair, there may be increased risk aortic and brain aneurysm, early coronary artery disease and sudden cardiac death. These long-term negative outcomes can be managed by a heart healthy life and being an active and informed patient. Our group’s purpose is to share information to ensure that everyone has the best and most comprehensive care and to identify and address any issues before they impact quality and length of life.
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Our Facebook Group

Our Facebook Group, Coarctation of the Aorta, serves as our primary connection to the community of people who have been affected by the condition. It has over 750 members and features a lively conversation about the issues that face the community as well as advice for newly diagnosed patients.