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Resource Center
General Education
Resources listed below include:
- Adult Congenital Heart Fact Sheet (PDF)
- United States Organizations
- International Organizations
- Professional Organizations
- About CHD
- Congenital Heart Anomalies Support, Education and Research (CHASER)
- Congenital Heart Defect Awareness Quilt Project
- Congenital Heart Information Network
- Heart Research Center
- Heart Failure Online
- Hypertrophic Cardiomyopathy Association
- Kawasaki Disease Foundation
- Kawasaki Families' Network
- Kids With Heart National Association for Children's Heart Disorders.
- Learning Disabilities Association—LDA is a nonprofit national organization for people with learning disablities.
- National Marfan Foundation
- Noonan Syndrome Support Group, Inc.
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PH Central
An organization for pulmonary hypertension. -
Pulmonary Hypertension Association
PHA provides information to people with pulmonary hypertension, primary pulmonary hypertension, families, and physicians. - Sudden Arrhythmia Death Syndromes Foundation (SADS)
- Turner's Syndrome Society of the United States This site provides information on Turner's Syndrome, which may have an associated CHD.
- Velo-Cardio-Facial Syndrome Educational Foundation
Also see the World Congenital Heart Directory
- Adults with Congenital Heart Conditions (ACHC) New Zealand
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Association Nationale des Cardiaques Congénitaux (ANCC)
French organization for CHD. - Canadian Adult Congenital Heart Network (CACHNET)
- Canadian Congenital Heart Alliance (CCHA)
- Childrens Heart Society
- Grown Up Congenital Heart (GUCH) - GUCH is an organization for ACHDers in the UK
- Heart Defects Society of Windsor and Essex County (Canada)
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Jugendliche und Erwachsene mit angeborenem Herzfehler (JEMAH) (German language only)
German organization for adolescents and adults with CHD. -
Nederlandse Hartstichting (Dutch language only)
Responsible for the Hartenark, a support group for people with CHD and their families. -
Nos enfants cardiaques
Belgian organization. -
Piccoli Cuori
Italian organization. - Synja (Sydännuoret ja -aikuiset)
This is a Finnish organization for people with CHD. The Synja site is in Finnish.
- American College of Cardiology
- American Society of Echocardiography
- American Society of Nuclear Cardiology
- Australia Heart Foundation
- European Society of Cardiology
-
Herzstiftfung (German Heart Foundation) (German language only)
- International Society for Adult Congenital Cardiac Disease
- Interuniversity Cardiology Institute of the Netherlands (ICIN)
- Japanese Circulation Society
- Northeast Pediatric Cardiology Nurses Association (NPCNA)
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Osterreischiche Kardiologische Gesellschaft (Austrian Society of Cardiology) (German language only)
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Sociedad Espanola de Cardiologia (Spanish Society of Cardiology) (Spanish language only)
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Sociedade Brasileira de Cardliologia (Brazilian Society of Cardiology) (Portuguese language only)
- Societa Italiana di Cardiologia (Italian Society of Cardiology) (Italian language only)
- Society of Thoracic Surgeons
- World Health Organization
-
Care of the Adult With Congenital Heart Disease
Presented at the 32nd Bethesda Conference, Bethesda, Maryland, October 2-3, 2000. J Am Coll Cardiol 2001;37:1161-98. - American College of Cardiology Health Passport (PDF File)
- American Heart Association: Adults with CHD
- American Heart Association CHD Page (English language version)
- American Heart Association CHD Page (Spanish language version)
- American Heart Association CHD Statistics
- American Heart Association Glossary
- AHA: Adults with Congenital Heart Disease
- AHA: Anticoagulation
- AHA: Insurance, Legal Issues and Advance Directives
- CACHNET: Adult Congenital Heart Disease Glossary
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Cardiopatias Congenitas
CHD information and resources in Spanish. - Consensus Conference General Recommendations
- Heart Center Encyclopedia (Cincinnati Children's Hospital Medical Center)
- ISACCD: Glossary for Adult Congenital Heart Disease
- KU Medical Center Pediatric Cardiology CHD Page
- March of Dimes Fact Sheet
- Mayo Clinic Patient/Family Guide to Adult Congenital Heart Disease
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Royal Children's Hospital, Melbourne, Australia: Library of Heart Diagrams
Includes definitions as well as diagrams.