Advocacy & Research
A central component of ACHA’s mission is advocating on behalf of the unmet needs of adults with Congenital Heart Defects.
Health Surveillance
Virtually all survivors of childhood heart defects have an increased risk of developing cardiac problems, and the 50% with more complex problems have a high risk of new problems as they age. Prompt diagnosis and treatment can preserve and improve health and prolong life, but few ACHD survivors currently get recommended heart checkups. For more information on health surveillance needs in your defect, click here.
Specialized ACHD Care
Congenital Heart Defects are very different from “regular” adult heart problems. Experts recommend that those with complex conditions should receive regular care at programs that specialize in adult congenital heart care. But most complex heart defect survivors are currently cared for at centers with no special training in congenital heart problems. There is a national shortage of ACHD programs. For a listing of national ACHD programs, click here.
Research
There is currently very little research on how to improve and prolong life-long health in congenital heart conditions. Patients and families continue to make choices without information about long-term outcomes. ACHA is advocating for more ACHD research, including the development of a national Adult Congenital Heart Disease Registry. For more information on ACHD research and the registry initiative, click here.
Public Awareness
Congenital Heart Defects are the most common form of birth defect and affect approximately 1.8 million Americans. For more information on ACHA's efforts to raise public awareness of the life-long needs of Congenital Heart Defect survivors, click here.
In 2000, a group of international ACHD experts came together to discuss health care needs for adults with Congenital Heart Defects. Their report, entitled "The 32nd Bethesda Conference on the Care of Adults with Congenital Heart Disease," provides a comprehensive statement about the unmet needs of ACHDers. ACHA endorsed the report's findings in 2001. A summary of this report can be found here. The full text can be found here.
