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 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.

What you can do now …

Write, call and visit your legislators to ensure funding for the Congenital Heart Futures Act

Visit your legislators to encourage them to support funding for CHD research during Summer In-district Lobby effort. Register online or email bfoley@childrensheartfoundation.org

Summer Lobby Webinar is available to view here: http://vimeo.com/13856768

Learn more about the need for screening for congenital heart defects.

Advocacy Partners

By joining forces with other congenital heart defect organizations, CHF gains tremendous economies of scale that will enable us to reach our goals more efficiently.

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 (NCHC). Today, the coalition is comprised of multiple patient organizations including Mended Little Hearts (MLH,) It’s My Heart (IMH,) Little Hearts and Saving Little Hearts (SLH,) with the collective mission to improve and prolong the lives of CHD survivors as well as prevent Congenital Heart Defects.

The Children’s Heart Foundation is an active member of several professional congenital heart organizations including the Joint Council of Congenital Heart Disease (JCCHD) and the newly formed Congenital Heart Public Health Consortium (CHPHC). The Joint Council on Congenital Heart Disease (JCCHD) is a council of representatives from organizations related to pediatric cardiology: the Sub board of Pediatric Cardiology, American Board of Pediatrics, the Council on Adult Congenital and Pediatric Cardiology, American College of Cardiology, the Council of Cardiovascular Disease in the Young, American Heart Association, and the Section of Cardiology and Cardiac Surgery, American Academy of Pediatrics and includes liaison representation from the International Society of Adult Congenital Heart Disease (ISACHD), the Congenital Heart Surgeon's Society (CHSS), the Society of Thoracic Surgery (STSS), and the National Congenital Heart Coalition (NCHC). Originally formed to improve communication and collaboration between the various groups involved with congenital heart disease (CHD) and pediatric cardiology, the JCCHD’s goal is to share information between the represented organizations and to help coordinate national activities related to pediatric cardiology, pediatric cardiovascular surgery and CHD.

The CHPHC brings together patient groups such as those in the National Congenital Heart Coalition (NCHC), physician groups such as the American Academy of Pediatrics, the American Heart Association and the American College of Cardiology, and governmental agencies such as the National Heart Lung and Blood Institute (NHLBI) and the Centers for Disease Control and Prevention (CDC) to address the needs of patients with congenital heart defects.

Recognizing that the need for quality advocacy requires year-round commitment, The Children’s Heart Foundation has teamed up with the Adult Congenital Heart Association to address our ongoing advocacy needs.