Advocacy & Research
A central component of ACHA’s mission is advocating on behalf of the unmet needs of adults with Congenital Heart Defects.
ACHA's Vision 2020 Initiative
ACHA Vision 2020 is an initiative to accelerate the development of adult congenital heart care in the United States. It will bring together national leaders in congenital heart disease to address major existing barriers to providing adequate care for the adult congenital population in the United States. The vision is to establish ACHD as a field that delivers quality lifelong care for adults in the USA. In so doing, we will prevent premature death and disability and prolong health and well-being for congenital heart patients. The Initiative kicked off at the Adult Congenital Heart Association’s first Vision 2020 Forum in Boston on April 26, 2009. For more information, click here.
The first federally-funded national initiative addressing the life-long needs of congenital heart patients became law in March of 2010. Provisions of the Congenital Heart Futures act call for increased research and improved surveillance. We are now working to ensure adequate funding of this new legislation. Learn more about the Act and related advocacy efforts on the Congenital Heart Futures Act page.
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.
For a list of FAQs about ACHD Subspecialites click here
ACHA believes that a quality health care system for adults with congenital heart disease must be built on adult congenital heart research. In addition to advocating for national research funding, ACHA also engages in research in partnership with national congenital heart researchers. Currently we are engaged in two research projects. The Heart-ACHD project will help us learn more about what education and resources adults with congenital heart disease need to help them stay in cardiac care. It is a joint project with the Alliance for Adult Research in Congenital Cardiology. It was awarded a Partners in Research Grant by the National Institutes of Health. The Parent Knowledge Study is a joint project with nine national pediatric cardiology programs. It will help us learn more about how we can help parents understand their child's life-long cardiac care needs.
For updates and developments in CHD Research, click here.
For more information on the HEART-ACHD Study, click here.
For more information on the Parent Knowledge Study, click here.
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.
As of December of 2008, ACHD experts have revisited, reviewed and rewritten the health care guidelines for adults living with congenital heart defects in a joint conference of the American College of Cardiology and the American Heart Association. ACHA fully endorses these guidlines, an exective summary of which can be read here.
