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Support & Community
Email Lists
The following is a list of other mailing lists focusing on CHD and related conditions. This information is provided as a service and these lists are not endorsed by ACHA.
For People with CHD
- ACHD: Adults with Congenital Heart Defects - Congenital Heart Information Network (CHIN) listserv for adults with CHD. This list is open only to CHIN members. Please see their listserv directory for more information.
- CHD-UK - list has been set up for families and people with CHD within the United Kingdom
- CHD_Webmaster - Discussion group for webmasters of Congenital Heart Disease sites, to share ideas and offer advice about website construction. Your Website must be devoted to Congenital Heart Disease, to join this list. To join, send a blank message to chd_webmaster-subscribe@aghorner.force9.co.uk.
- Ebsteins Anomaly-Adults - This list is for adults with Ebsteins to talk about living with Ebsteins, including medical care, the newest research, discuss how our families deal with us, etc.
- Eurohearts Listserv - For people with congenital heart defects to discuss issues and share experiences. To join EuroHearts please go to http://www.egroups.com/group/eurohearts.
- HeartlandHearts - list for families and adults in the Midwest
- L-TGA - support group for adults or parents with children with CCTGA
- Noonan Syndrome - list 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 the subject and body of the message.
- Pulmonary Hypertension Association Lists - The PHA runs several lists for people affected by pulmonary hypetension:
- PHA Advocacy - list for PHA members wishing to participate in grassroots awareness and advocacy efforts
- PHA International
- Synjan postituslista - Tilaa lista eGroupsin kautta. Lista löytyy sieltä otsikon Health | Disorders/Disease alta, tai suoraan osoitteesta http://www.egroups.com/subscribe.cgi/Synja.
- VCFS Digest - list 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 yourlastname in the subject and body of the message.
For Families
- CHD-Scotland - This group has been set up to offer a network of support to families coping with a child with a Congenital Heart Defect who live in Scotland
- CHD-UK - list has been set up for families and sufferers of CHD within the United Kingdom
- Families with Heart - group in NH for families of children with CHD
- GPCHD - Grandparents of Children and Adults with Congenital Heart Defects - Congenital Heart Information Network (CHIN) listserv for grandparents. This list is open only to CHIN members. Please see their listserv directory for more information.
- Grandparents of CHD - Grandparents/kids with Congenital Heart Defects
- HeartlandHearts - list for families, and adults in the Midwest.
- Hearts2gether
- Herzkinderforum - German language list for families of children with CHD. Please e-mail bernd.asselborn@koeln.netsurf.de
- HLHSH: Hypoplastic Left Heart Syndrome - Congenital Heart Information Network (CHIN) listserv for families of children with HLHS. This list is open only to CHIN members. Please see their listserv directory for more information.
- HTX: Heart Transplant Support Group - Congenital Heart Information Network (CHIN) listserv for families and individuals dealing with heart and heart lung transplant issues. This list is open only to CHIN members. Please see their listserv directory for more information.
- Kawasaki Syndrome - list primarily serving families with children with Kawaski Syndrome. The list is associated with the Kawasaki Families' Network but is open to anyone interested in the syndrome. To subscribe, send an e-mail to listproc@hawaii.edu with SUBSCRIBE kawasaki-l yourfirstname yourlastname in the message body.
- L-TGA - support group for adults or parents w/children with CCTGA
- Noonan Syndrome - list 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 the subject and body of the message.
- Pulmonary Hypertension Association Lists - The PHA runs several lists for people affected by pulmonary hypertension:
- PHA Advocacy - list for PHA members wishing to participate in grassroots awareness and advocacy efforts
- PHA International
- PHA Parents
- PDHeart - Congenital Heart Information Network (CHIN) listserv for families of children with CHD. This list is open only to CHIN members. Please see their listserv directory for more information.
- PTCHD - Congenital Heart Information Network (CHIN) listserv parents of teens and young adults with CHD and interested health professionals. This list is open only to CHIN members. Please see their listserv directory for more information.
- SACHD - Congenital Heart Information Network (CHIN) listserv for parents of school age children with CHD. This list is open only to CHIN members. Please see their listserv directory for more information.
- VCFS Digest - list 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 yourlastname in the subject and body of the message.
Grief/Loss
- CHDL: Congenital Heart Disease Loss Support - Congenital Heart Information Network (CHIN) listserv for families who are coping with the loss of a loved one. This list is open only to CHIN members. Please see their listserv directory for more information.
- Grieving Hearts - The Kids With Heart list for people who have lost loved ones to CHD
- HeartlandHeartsAngels - for families who have lost a child to Congenital Heart Disease (CHD).