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General Education

U.S. ACHD Resources

Disclaimer: The below resource listing is provided by the Adult Congenital Heart Association (ACHA) for informational purposes only. The presence of a link to or information about an online resource does not represent an endorsement or recommendation by ACHA. We make every effort to provide information that is accurate and timely, but make no guarantee in this regard. ACHA assumes no responsibility about the type, amount, quality of assistance, support or service provided by other agencies or organizations.

We encourage each person to thoroughly review any listed resource to make sure the services provided are appropriate for his/her needs. Each individual should consult with, and rely only on the advice of, his/her ACHD healthcare provider. The linked information is not a substitute for individual advice from an ACHD provider.

For ACHD resources in the United States, click here for the PDF.


International Organizations

Adults with Congenital Heart Conditions (ACHC) New Zealand 

Association Nationale des Cardiaques Congénitaux (ANCC): French organization for CHD 

Canadian Adult Congenital Heart Network (CACHNET) 

Canadian Congenital Heart Alliance (CCHA) 

Children's 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) 

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 - Associazione O.N.L.U.S (Italian language only)

Synja (Sydännuoret ja -aikuiset): This is a Finnish organization for people with CHD. The Synja site is in Finnish. 


About CHD

ACC/AHA Guidelines for the Management of Adults with Congenital Heart Disease: Presented December 2008 

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) 

Web Book: Adults with Congenital Heart Disease 

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 Defects 

AHA: Anticoagulation 

AHA: Insurance, Legal Issues and Advance Directives 

CACHNET: Adult Congenital Heart Disease Glossary 

Cardiopatias Congenitas: CHD information and resources in Spanish 

Consensus Conference General Recommendations 

Heart Center Encyclopedia (Cincinnati Children's Hospital Medical Center) 

ISACHD: Glossary for Adult Congenital Heart Disease 

March of Dimes Fact Sheet 

Mayo Clinic Patient/Family Guide to Adult Congenital Heart Disease 

Royal Children's Hospital, Melbourne, Australia: Library of Heart Diagrams 

Cove Point Foundation Congenital Heart Disease