Useful Links
General
- American Heart Association
Provides parents with extensive, up-to-date information regarding heart disease and treatment.
- Congenital Heart Information Network
Provides information, resources and support covering all kinds of heart disease. Includes stories written by kids who have undergone treatment, chat rooms and links to additional Web sites.
- Pediheart
Offers a separate place for parents, children and medical practitioners. Kidzone includes the anatomy of the heart and information about common heart defects as well as a story section where families can read about other kids with heart defects.
- The Children's Heart Foundation
Funds the most promising research to advance the diagnosis, treatment and prevention of congenital (present at birth) heart defects. Includes news, statistics, grant information and an online version of its book for families, "It's My Heart".
- "It's My Heart" Online Book
An in-depth guide for families, covering how the heart works, various heart diseases, treatment and other resources.
Specialized
- Cardiac Arrhythmias Research and Education Foundation
Provides funding for research and to increase professional and public awareness of unexpected sudden cardiac death due to acquired heart disease and inherited rhythm disorders.
- National Organization for Rare Disorders
Helps people with rare diseases and the organizations that serve them. Includes a wide array of information, including a database of rare diseases, a list of organizations that help, news, research and a listing of programs and services.
- Sudden Arrhythmia Death Syndromes Foundation
Helps prevent sudden and unexpected cardiac death in children and young adults. The site includes news, services and other resources.
Adult / Adolescent
- Adult Congenital Heart Association
Seeks to improve the quality of life of adults with congenital (present at birth) heart defects. The site offers information, support, message boards and other resources.
- Adults With Congenital Heart Disease
Provides information for people with heart defects who are now reaching adulthood about how to live a full, active life.
Transplant
- Transplant Living
A project of the United Network of Organ Sharing. Contains extensive information for patients, including news and a description of what happens during a transplant.
- The United Network for Organ Sharing
A nonprofit scientific and educational organization that matches organs with recipients and collects and manages data about every transplant occurring in the United States. Offers extensive data on transplants, including information from each hospital that performs a transplant.
