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Support & Community
E-mail 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 Congenital Heart Defects. 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 Congenital Heart Defects 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 e-mail message to chd_webmaster-subscribe@aghorner.force9.co.uk.
- Ebsteins Anomaly-Adults—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.
- Eurohearts Listserv—This listserv is for people with Congenital Heart Defects to discuss issues and share their experiences. To join EuroHearts Listserv please go to www.egroups.com/group/eurohearts.
- HeartlandHearts—This listserv is for families and adults living with Congenital Heart Defects in the Midwest.
- L-TGA—This is a support group for adults or parents with children with CCTGA.
- Noonan Syndrome—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.
- Pulmonary Hypertension Association Lists—The PHA runs several lists for people affected by pulmonary hypetension:
- PHA Advocacy—This list is 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 www.egroups.com/subscribe.cgi/Synja.
- 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.
For Families
- CHD-Scotland—This group offers a network of support to families in Scotland who are living with a child with a Congenital Heart Defect.
- CHD-UK—This list supports families and individuals with Congenital Heart Defects within the United Kingdom.
- Families with Heart—This group supports families of children with Congenital Heart Defects living in New Hampshire.
- GPCHD—This group, Grandparents of Children and Adults with Congenital Heart Defects, is the Congenital Heart Information Network (CHIN) listserv for grandparents. You must be a CHIN member to participate. Please see CHIN's listserv directory for more information.
- Grandparents of CHD—This group supports grandparents of children with Congenital Heart Defects.
- HeartlandHearts—This listserv is for families and adults with Congenital Heart Defects living in the Midwest.
- Hearts2gether—This list is for people to post and share information about various support groups and support activities for the Congenital Heart Disease community. It can also be used for general support, but it is more a place for businesslike planning and collaboration on things affecting the CHD world.
- Herzkinderforum—This is a German language listserv for families of children with Congenital Heart Defects. To join, please e-mail bernd.asselborn@koeln.netsurf.de.
- HLHSH: Hypoplastic Left Heart Syndrome—This is a Congenital Heart Information Network (CHIN) listserv for families of children with HLHS. You must be a CHIN member to participate. Please see CHIN's listserv directory for more information.
- HTX: Heart Transplant Support Group—This is a Congenital Heart Information Network (CHIN) listserv for families and individuals dealing with heart and heart lung transplant issues. You must be a CHIN member to participate. Please see CHIN's listserv directory for more information.
- Kawasaki Syndrome—This list is set up to primarily serve 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-I YOURFIRSTNAME YOURLASTNAME in the subjects and message body.
- Kids With Heart—This organization provides support, information, and education for the families of the children living with Congenital Heart Defects.
- Little Hearts, Inc.—This is a non-profit support organization for families affected by CHD nationwide.
- L-TGA—This is a support group created for adults or parents of children living with CCTGA.
- Noonan Syndrome—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 the subject and body of the message.
- Pulmonary Hypertension Association Lists—The PHA runs several lists for people affected by pulmonary hypertension:
- PHA Advocacy—This list is for PHA members wishing to participate in grassroots awareness and advocacy efforts.
- PHA International
- PHA Parents
- PDHeart—This is a Congenital Heart Information Network (CHIN) listserv for families of children with Congenital Heart Defects.You must be a CHIN member to participate. Please see CHIN's listserv directory for more information.
- PTCHD—This is a Congenital Heart Information Network (CHIN) listserv for parents of teens and young adults with Congenital Heart Defects and interested health professionals. You must be a CHIN member to participate. Please see CHIN's listserv directory for more information.
- SACHD—This is a Congenital Heart Information Network (CHIN) listserv for parents of school age children with CHD. You must be a CHIN member to participate. Please see CHIN's listserv directory for more information.
- 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 YOURLASTNAME in the subject and body of the message.
Grief/Loss
- CHDL: Congenital Heart Disease Loss Support—This is a Congenital Heart Information Network (CHIN) listserv for families who are coping with the loss of a loved one. You must be a CHIN member to participate. Please see CHIN's listserv directory for more information.
- Grieving Hearts—This listserv is sponsored by Kids With Heart for people who have lost loved ones to Congenital Heart Defects.
- HeartlandHeartsAngels—This listserv is for families who have lost a child to Congenital Heart Disease.