• 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 websites.
  • 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.


  • 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 (NORD)
    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 (SADS)
    Helps prevent sudden and unexpected cardiac death in children and young adults. The site includes news, services and other resources.


  • 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.


  • Pediatric Heart Transplant: A Guide for Patients and Families (PHTS Foundation)
    This manual is designed to provide information about heart transplantation in children for parents and family members.
  • Transplant Living (UNOS)
    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 (UNOS)
    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.

Support Resources

  • CardioSmart
    A patient education site from the American College of Cardiology. CardioSmart's mission is to engage, inform and empower patients to better prepare them for participation in their own care.
  • Congenital Heart Information Network
    A national organization that provides reliable information, support services, financial assistance and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects and the professionals who work with them.
  • Mended Little Hearts
    A national support program for parents of children with heart defects and heart disease.
  • National Association for Down Syndrome
    Offering information, support and advocacy for individuals with Down syndrome and their families.
  • National Marfan Foundation
    Dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.