Advocacy

The Children’s Heart Foundation (CHF) represents approximately two million American children and adults as well as 65 million children and adults worldwide who are afflicted with Congenital Heart Disease (CHD). Each year over one million babies around the world, including 40,000 in the United States, are born with a congenital heart defect (March of Dimes). CHD is the leading cause of infant death in the US and in every country around the world. Furthermore, CHD is the leading cause of death from birth defects. Although mortality rates have been improving, CHD contributed to 5810 deaths in the US in 2004 (NCHS). Clearly, advocacy for more research is vitally needed.

As the only organization that exclusively funds CHD research, CHF has a critical role in advocating for increased CHD research and other significant CHD issues in both the private and public arenas. Our strategy is focused on collaboration with other nationally recognized Congenital Heart organizations that have a proven track record as proponents of CHD issues. To this end, The Children’s Heart Foundation joined forces with the Adult Congenital Heart Association (ACHA) and the Congenital Heart Information Network (CHIN) in 2007 to form the National Congenital Heart Coalition. By collaborating with other leading CHD organizations on advocacy, CHF gains tremendous economies of scale that will enable us to reach our goals more efficiently.

The mission of the Congenital Heart Coalition is to improve and prolong the lives of CHD survivors as well as prevent Congenital Heart Defects. The Coalition has identified three focus areas: Research, Screening and Transition/Lifelong Care and developed policy statements for each area.