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Links to Other Websites

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Many organizations are committed to understanding more about congenital heart defects and providing helpful resources for families and healthcare providers. Click the links below to find more information.

Adult Congenital Heart Association
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, providing education, outreach, and advocacy.

American Academy of Pediatrics

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
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
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

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
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
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
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
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
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
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
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.
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
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
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
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
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
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.

 

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