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Professional Groups Patient/Parent Groups Other Sources of Information

Professional Groups

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.

Centers for Disease Control and Prevention
The United States Centers for Disease Control and Prevention is the national public health agency of the United States. It is a United States federal agency, under the Department of Health and Human Services, and is headquartered in Atlanta, Georgia.

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 .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.

Congenital Heart Information Network
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.

Adult Congenital Heart Disease Learning Center
The ACHD e-Learning Center is being jointly developed and maintained by the Cincinnati Children's Hospital Heart Institute and the International Society for Adult Congenital Heart Disease. It provides ACHD specific learning for all ACHD professionals and cardiology trainees.

Canadian Pediatric Cardiology Association
The CPCA was formed in 1971 with its mission being to advance the practice of Pediatric Cardiology in Canada. The CPCA serves as a vehicle to promote collaboration and communication between physicians and trainees across the country within this diverse and rapidly expanding field. The CPCA network helps facilitate development of clinical care guidelines, pan-Canadian research initiatives, educational programs for trainees and cardiologists to name just a few of its roles. As an affiliate member of the Canadian Cardiovascular Society™ (CCS), the CPCA is an active participant in the annual Canadian Cardiovascular Congress (CCC).

CHiP Network
A network of congenital heart professionals that exists to facilitate communications between congenital heart professionals locally, regionally, and globally.

Hypertrophic Cardiomyopathy Association
The HCMA is the preeminent organization improving the lives of those with hypertrophic cardiomyopathy, HCM, preventing untimely deaths and advancing global understanding.

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Patient/Parent Groups

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.

Conquering CHD
We are Conquering CHD. We exist to conquer the most common birth defect. We engage, listen, learn, and act.

The Canadian Congenital Heart Alliance: Glossary of Terms
Canadian Adult Congenital Heart Alliance has created a glossary of terms commonly used by health care providers who treat congenital heart disease patients.

The Canadian (SADS) Foundation
The Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation, a registered Canadian charity, is the only patient advocacy group in Canada dedicated to supporting families affected by inherited cardiac rhythm disorders.

AboutKidsHealth: Congenital Heart Conditions Resource Centre
AboutKidsHealth is a portal from The Hospital for Sick Children, Toronto. is targeted to parents, children, and first-tier health care providers and offers information about everyday health and complex medical conditions. It has many sections of interest for patients and families including the one that teaches the anatomy and physiology of major organ systems using animated, interactive medical illustrations.

Cardiac Kids
Cardiac Kids is a volunteer group established in 2000 to raise much-needed funds for children who are suffering from congenital heart disease. Funds raised by Cardiac Kids are used to support the children and staff of the cardiology ward at The Hospital for Sick Children.

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.

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.

Toronto Congenital Cardiac Center 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.

I Heart Change
This website is designed mainly for young people with congenital heart disease (CHD). And we know that family, friends and health care providers might also want to check it out!

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.

Kids With Heart
Providing support, education, and resources to those affected by congenital heart defects since 1985.

Mended Little Hearts
Mended Hearts is a non-profit organization that has been offering the gift of hope to heart disease patients, their families and caregivers.

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.

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.

Sisters by Heart
Sisters by Heart is a group of parents who came together during their journeys with Hypoplastic Left Heart Syndrome, many of whom were fortunate to meet prior to their child’s birth. We've supported each other in our journeys with single ventricle for the past decade. Knowing the challenges and difficulties we faced at our own child's diagnosis (and those first several months of life), we created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of our mission is sending care packages to parents at the beginning of their journey. We want them to know they are not alone and to provide resources and understanding while their child undergoes care and treatment from birth and beyond.

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Other Sources of Information

Wikipedia on Congenital Heart Diseases for example, Hypoplastic Left Heart Syndrome 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 Library of Medicine information page for patients and families on congenital heart defects.
National Heart, Lung and Blood Institute (NHLBI), information page National Heart, Lung and Blood Institute (NHLBI), information page.

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