Advocacy and support groups exist on a regional, national, and international level and can be an excellent resource for individuals with congenital heart disease or related conditions as well as their loved ones. The following is a directory of groups, some of which exist only as mailing lists. Please note that inclusion in this list does not imply any endorsement by ISACCD. If you know of a group that is not listed, please contact us and we will consider it for inclusion.
International
- Adults with Ebstein's Anomaly Network This list is for adults with Ebsteins Anomaly to talk about living with Ebsteins, including medical care, the newest research, and discussions about how our families deal with us, etc.
- L-TGA group This is a support group for adults with CCTGA or parents of children with CCTGA.
- Noonan Syndrome listserv This list is run by the Noonan Syndrome Support Group for anyone affected by the syndrome. To subscribe, send an e-mail to listserv@home.ease.lsoft.com with SUBSCRIBE NOONAN-SYNDROME in both the subject and body of the message. There are additional listservs for teens with Noonan Syndrome and for adults with Noonan Syndrome
- VCFS Digest This list is for individuals, families, and researchers/professionals dealing with VCFS/DiGeorge Syndrome (22q11.2 deletion). To subscribe, send an e-mail to listserv@maelstrom.stjohns.edu with SUBSCRIBE VCFS YOURFIRSTNAME YOUR LAST NAME in the subject and body of the message.
- Grandparents of CHD This group supports grandparents of children with Congenital Heart Defects.
National
North America:
- 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 (CHIN) The CHIN runs several listservs including those for adults with congenital heart disease, parents and grandparents of individuals with congenital heart defects, patients and families dealing with heart transplants, and more. You must be a CHIN member to participate. See their listserv directory for more information
- Kids With Heart This organization provides support, information, and education for the families of the children living with Congenital Heart Defects.
- Grieving Hearts This listserv is sponsored by Kids With Heart for people who have lost loved ones to Congenital Heart Defects.
- Little Hearts, Inc. This is a non-profit support organization for families affected by CHD nationwide.
- Canadian Congenital Heart Alliance The Canadian Congenital Heart Alliance (CCHA) is an organization made up of patients with a congenital heart defect, their friends, families, and the medical community.
- CUORE MATTO - (German, Switzerland) CUORE MATTO was founded in 1999 by a group of adults with CHD, with the help of parents and physicians. Its mission is to promote the care and education of ACHD patients and to improve communication between them. Please review our presentation given at the ACC.08 meeting in Chicago.
- Down's Heart Group The Down's Heart Group is a UK charity offering support and information relating to heart conditions associated with Down's Syndrome
- French Congenital Heart Disease Organization
- Fundatia pentru Protectia Adultilor cu Boli Cardiace Congenitale (FPABCC) A Romanian support group
- Grown-Up Congenital Heart Patients Association (GUCH) The Grown Up Congenital Heart (GUCH) Patients Associations' mission is to help adults who were born with a heart condition cope with their condition and champion their rights within all aspects of life.
- CHD-UK List This list has been set up for families and people with Congenital Heart Defects within the United Kingdom.
- Eurohearts listserv This listserv is for people with Congenital Heart Defects to discuss issues and share their experiences.
- Synjan postituslista (Finnish) Tilaa lista eGroupsin kautta. Lista l๖ytyy sieltไ otsikon Health | Disorders/Disease alta, tai suoraan osoitteesta http://www.egroups.com/subscribe.cgi/Synja.
- Herzkinderforum This is a German language website and listserv for families of children with Congenital Heart Defects. To join the listserv, please e-mail bernd.asselborn@koeln.netsurf.de.
- ACHC New Zealand A group providing social and practical support for adults born with heart conditions.
Regional
North America:
- Massachusetts Heart Coalition The Massachusetts Heart Coalition started as a small nucleus of parents and adults whose lives were touched by Congenital Heart Defects. Our desire to eradicate congenital heart defects and to inform others of the need for research is what motivates us.
- Heartland Hearts This listserv is for families and adults living with Congenital Heart Defects in the Midwest.
- Heart Defects Society of Windsor and Essex County The Heart Defects Society of Windsor and Essex County offers compassionate support within the community, provides educational, emotional and financial resources to improve the quality of life of individuals affected by Congenital Heart Defects. The Heart Defects Society aims toward being a high profile non-profit organization in the province of Ontario.