Here are some helpful resources to help you understand more about CHDs. Click the links below to get your 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 and providing education, outreach, and advocacy.
American Academy of Pediatrics
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.
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 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.
Camp Braveheart at Camp Twin Lakes in Rutledge, GA
Camp Braveheart is a camp for children with congenital or acquired heart defects ages 7 to 17. At Camp Braveheart, positive self-esteem with fun and learning is promoted. From team-building activities to individual support, this camp has something for everyone.
Centers for Disease Control and Prevention
CDC is making progress toward understanding the healthcare needs and outcomes among the growing population of older children and adults with congenital heart defects. Get the latest information on what are CHDs, tracking and research, articles, statistics, real stories, and much more.
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 toward 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.
Kids 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 “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. Their website offers a brief overview of congenital heart defects, provides descriptions for some specific defects, and directs readers to additional resources.
Mayo Clinic – CHD in Adults
Congenital heart disease (congenital heart defect) is one or more abnormalities in your heart’s structure that you’re born with. This most common of birth defects can alter the way blood flows through your heart. Defects range from simple, which might cause no problems, to complex, which can cause life-threatening complications. The Mayo Clinic website provides information on symptoms and causes, diagnosis and treatment, doctors and making appointments.
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 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.
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 were founded with the key purpose of being the resounding voice of the pediatric patient population. Through collaboration in education, research and advocacy, they work passionately to reduce the impact of congenital heart disease while striving to realize a world free from it.