Resources for Congenital Heart Defects

Many organizations are committed to understanding more about congenital heart defects and providing helpful resources for families and healthcare providers. Here are some useful resources for anyone living with congenital heart defects.

Adult Congenital Heart Association  http://www.achaheart.org/
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, providing education, outreach, and advocacy.

American Academy of Pediatrics http://www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/PEHDIC/Pages/Newborn-Screening-for-CCHD.aspx
The American Academy of Pediatrics (AAP) is a 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.

American College of Cardiology   http://www.cardiosource.org/
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 ACC provides professional education and operates national registries for the measurement and improvement of quality care.

American Heart Association http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/Congenital-Heart-Defects_UCM_001090_SubHomePage.jsp
The American Heart Association offers information about the effects of and risk 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.

Baby’s First Test   http://www.babysfirsttest.org/
Baby’s First Test is a resource designed for expecting and new parents to learn about newborn screening.  It also has resources to educate health professionals, other industry representatives and members of the public about newborn screening for different conditions, including congenital heart defects.

Children’s Heart Association http://heartchild.info/web/
The Children's Heart Association (formerly The Association for Children with Heart Disorders) is a support group run by families and friends of children with a heart defect for families with, or who have had, children with heart disorders.

Children’s Heart Foundation http://www.childrensheartfoundation.org/
The Children’s Heart Foundation works to understanding congenital heart defects by funding research to advance the diagnosis, treatment and prevention of congenital heart defects.

Congenital Heart Information Network http://tchin.org/default.aspx
The Congenital Heart Information Network is a national organization providing education, support services, and financial assistance resources. It helps families of children with a congenital heart defect or acquired heart disease, as well as adults living with a congenital heart defect.

Congenital Heart Public Health Consortium http://chphc.org/hostedsites/Pages/default.aspx
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.

Cove Point Foundation: Congenital Heart Disease http://pted.org/?id=list#1
This website is an in-depth resource on congenital heart defects. It offers information about specific types of congenital heart defects, including descriptions of the defects, treatments, and links to other resources.

It’s My Heart http://www.itsmyheart.org/
It’s My Heart is a non-profit organization that provides support to and advocates for those affected by Acquired and Congenital Heart Defects (CHD). It aims to increase awareness about CHD, provide resources and education, and create alliances and networks among families, groups, hospitals, and the community.

Kid’s With Heart http://kidswithheart.org/
Kid’s With Heart is an organization devoted to providing support for children and families affected by congenital heart defects. It provides parent-matching, online support, bereavement services, awareness products, and educational resources.

Little Hearts, Inc. https://www.littlehearts.org/Default.asp
Little Hearts, Inc. is a national organization providing emotional support, education, resources, parent networking, and hope to families affected by congenital heart defects. Support services consist of parent matching, discussion board, quarterly newsletters, and our popular "Stories of Hope". Membership consists of families who have or are expecting a child with a CHD.

March of Dimes http://www.marchofdimes.org/baby/congenital-heart-defects.aspx
The March of Dimes is a national organization focused on helping babies to be born healthy. Its website offers a brief overview of congenital heart defects, provides descriptions for some specific defects, and directs readers to additional resources.

Mended Hearts http://mendedhearts.org/
Mended Hearts provides support for heart disease patients, their families and caregivers, by facilitating a positive patient-care experience. Mended Hearts partners with 460 hospitals and rehabilitation clinics and offers services to heart patients through visiting programs, support group meetings and educational forums.

Mended Little Hearts http://mendedlittlehearts.org/mlh.htm
Mended Little Hearts is part of the Mended Hearts organizations and was established in 2004. They provide support to children with congenital heart defects and their families. Its website provides ways for families of “the littlest heart patients of all” to come together through support group meetings and visiting programs.

National Heart Lung and Blood Institute http://www.nhlbi.nih.gov/health/health-topics/topics/chd/
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.

Pediatric Congenital Heart Association http://conqueringchd.org/
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” They are founded on the key purpose to be the resounding voice of the pediatric patient population through collaboration in education, research and advocacy, to reduce the impact of congenital heart disease while striving to realize a world free from it.