At a glance
- Many organizations are committed to understanding more about congenital heart defects and providing helpful resources for families and healthcare providers.
- Having support and community resources can help increase confidence in managing heart defects, enhance quality of life, and assist in meeting the needs of families.
Resources
The Adult Congenital Heart Association is a national organization providing education and support services for adults with congenital heart defects and their families. They are focused on the long-term needs of adults with congenital heart defects and providing education, outreach, and advocacy.
The American Academy of Pediatrics (AAP) is an organization of 60,000 pediatricians dedicated to the physical, mental, and social health of infants, children, adolescents and young adults. The AAP provides recommendations and clinical guidance regarding a number of topics in pediatric health care, including answering questions pediatricians may have about pulse oximetry screening for critical congenital heart defects.
The American College of Cardiology (ACC), a nonprofit medical society, is dedicated to enhancing the lives of cardiovascular patients through continuous quality improvement, patient-centered care, payment innovation, and professionalism.
The American Heart Association offers information about the effects of and risks for congenital heart defects, as well as symptoms and treatment for children with congenital heart defects. This website also offers information about specific types of congenital heart defects.
The Children’s Heart Foundation works toward understanding congenital heart defects by funding research to advance the diagnosis, treatment and prevention of congenital heart defects.
CDC provides technical assistance to the Congenital Heart Public Health Consortium, a unique collaboration that brings together families, experts, and organizations to address congenital heart defects through surveillance, research, education, health promotion, and policy development.
Conquering CHD’s mission is to “Conquer Congenital Heart Disease.” They are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research, and awareness.
The March of Dimes is a national organization focused on helping babies to be born healthy. Their website offers a brief overview of congenital heart defects, provides descriptions for some specific defects, and directs readers to additional resources.
Mended Little Hearts is part of the Mended Hearts organization and was established in 2004. They provide support to children with congenital heart defects and their families. Their website provides ways for families of “the littlest heart patients of all” to come together through support group meetings and visiting programs.
The National Heart, Lung, and Blood Institute features an overview on congenital heart defects. It includes information on how the heart works, types of defects, causes, signs and symptoms, diagnosis, treatment, issues related to living with a congenital heart defect, and clinical trials.
CDC supports and collaborates with the NBDPN. The NBDPN is a group of over 225 individuals working at the national, state, and local levels, who are involved in tracking, researching, and preventing birth defects. The NBDPN serves as a forum for exchanging ideas about tracking and researching birth defects and for providing technical support for state and local programs. Established in 1997, the NBDPN assesses the effect of birth defects on children, families, and the healthcare system. The network also identifies risk factors for birth defects. This information can be used to develop strategies to prevent birth defects and to assist families and their providers in preventing other disabilities in children with birth defects.
