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.
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.
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: 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