Websites
Professional and Academic Organizations
Congenital Heart Surgeons' Society
The Congenital Heart Surgeons' Society (CHSS) is a premier organization of heart surgeons who treat defects in the heart existing from birth. The CHSS is devoted encourage and stimulate investigation and studies that will increase the knowledge of congenital cardiac physiology, pathology and therapy, and to correlate and disseminate such knowledge.
The Society of Thoracic Surgeons
The Society of Thoracic Surgeons (STS) is a nonprofit organization with a mission to enhance the ability of cardiothoracic surgeons to provide the highest quality patient care through education, research, and advocacy.
American Heart Association
This site provides general information about the heart, posts the warning signs for heart attack and provides reference guides to healthy diet.
National Heart, Lung, and Blood Institute
The National Heart, Lung, and Blood Institute (or NHLBI) is a division of the National Institutes of Health, located in Bethesda, Maryland. It is tasked with allocating about $2.7 billion in United States tax revenue per year (fiscal year 2004 estimate), to advancing the understanding of: development and progression of disease, diagnosis of disease, treatment of disease, disease prevention, reduction of health care disparities within the American population, and advancing the effectiveness of the U.S. medical system.
International Society for Adult Congenital Cardiac Disease
The purpose of the International Society for Adult Congenital Cardiac Disease is to promote, maintain and pursue excellence in the care of adults with congenital cardiac disease. The Society is dedicated to the advancement of knowledge and training in medical disciplines pertinent to congenital heart disease in adults.
Adult Congenital Heart Association
The Adult Congenital Heart Association (ACHA) is a nonprofit organization which seeks to improve the quality of life and extend the lives of adults with congenital heart defects. Through education, outreach, advocacy and promotion of research, ACHA serves and supports the more than one million adults with congenital heart defects, their families and the medical community.
Children's Health Information Network-Congenital Heart Diseases
This site provides extensive information for families of children with congenital and acquired heart disease, adults with congenital heart defects, and professionals who work with them.
International Society for Nomenclature of Paediatric and Congenital Heart Disease
This is the web portal of The International Working Group for Archiving and Cataloguing the Images and Videos of the Nomenclatures for Paediatric and Congenital Heart Disease or Archiving Working Group (AWG). The purpose of AWG is to identify, develop and maintain a virtual encyclopedia of representative images that illustrate the codes and definitions of the Working Groups of the ISNPCHD.
Patient support groups and Charitable Organizations
The Canadian Congenital Heart Alliance
The Canadian Congenital Heart Alliance (CCHA) is a registered charitable organization made up of patients with a congenital heart defect, their friends, families, and the medical community.
Children's Heart Link
Their mission is to improve the prevention and treatment of children with heart disease in developing countries
Children's Heart Society
This is a non-profit, non-government funded charitable organization, completely operated by volunteers and support families of children with heart disease. It offers inspiration and awareness.
Cincinnati Children's Hospital Medical Center
This site has excellent graphics to explain pediatric heart conditions and problems: signs, symptoms, diagnoses and treatments.
Congenital Cardiac Centre for Adults
This site is the Internet home page for the Canadian Adult Congenital Heart Network.
HeartKids Australia
HeartKids Australia works to support families who have a child with heart disease, reduce the incidence of Childhood Heart Disease and decrease the mortality rates for Childhood Heart Disease.
Heartz "R" Us
Davey is an adult that has been living with a complex heart disease for the past 4 decades. He talks about his surgeries and life overall. It is very useful information for heart children and their families.
Little Hearts: A Support Network for Parents of Children with Congenital Heart Diseases
This is a non-profit organization that provides support, resources, and hope for the parents of children living with a congenital heart defect.
PediHeart
This is an excellent site for parents and children. It offers information about the heart as well as heart defects. It provides links and allows you to ask questions.
Save A Child's Heart
This is one of the largest undertakings in the world providing urgently needed pediatric heart surgery and follow-up care for children from third world and developing countries.
PatientsLikeMe
PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease.
Children and Clinical Studies: an information page by National Heart Lung and Blood Institute
This page outlines the importance of research in kids, details on participation in a research study and various resources.
Other sources of Information
Wikipedia on Congenital Heart Diseases for example, Hypoplastic Left Heart Syndrome
National Library of Medicine information page for patients and families on congenital heart defects
National Heart, Lung and Blood Institute (NHLBI) information page
Ads by Google support research at CHSS Data Center
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