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Resource Center
For Caregivers & Families

Information & Resources

• Adoption Network
• Adoptive Families of America
• American College of Cardiology Health Passport (PDF File)
• Baby Hearts Press
  Publisher of Hypoplastic Left Heart Syndrome and The Heart of a Mother.
• Care of the Adult With Congenital Heart Disease (American College of Cardiology 32nd Bethesda Conference)
  The conference addressed several topics, including the healthcare needs of adults with congenital heart disease, care delivery systems, and access to care.
• The Children's Heart Foundation
  The mission of The Children's Heart Foundation is to raise funds to support research on the causes of Congenital Heart Defects and about improved methods of diagnosis, treatment, and prevention.
• Congenital Cardiology Today
• Congenital Heart Disease and Pediatric Cardiology
  This site is published by the American College of Cardiology (ACC) for pediatricians, surgeons, and internal medicine specialists who are involved in the care of adults with Congenital Heart Defects.
• Congenital Heart Disease Information and Resources
  This site is published by the Congenital Heart Information Network (CHIN).
• Congenital Heart Disease Resources Page
  This website has useful links and information about adult Congenital Heart Defects.
• CongenitalHeartDefects.com
• PubMed
  PubMed is a free, web-based way to search Medline for medical article citations.
• Pulmonary Hypertension (Mayo Clinic)
  Pulmonary hypertension (high blood pressure in the pulmonary arteries) is a complication some CHDers may develop.

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For People with CHD

The following is a list of discussion listservs focusing on CHD and related conditions.

• 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 CHIN's listserv directory for more information.
• CHD-UK
  This l ist has been set up for families and people with Congenital Heart Defects within the United Kingdom.
• CHD_Webmaster
  This is a discussion group for webmasters of Congenital Heart Defect sites, to share ideas and offer advice about website construction. Your website must be devoted to Congenital Heart Defects 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 Anomaly to talk about living with Ebsteins, including medical care, the newest research, 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 www.egroups.com/group/eurohearts.
• HeartlandHearts
  This list is for Congenital Heart Defect patients living in the Midwest and their families.
• L-TGA
  This is a support group for adults or parents w/children with Congenitally Corrected Transposition of the Great Arteries (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 hypetension:
  • PHA Advocacy
    This list is for PHA members wishing to participate in grassroots awareness and advocacy efforts.
  • PHA International
• Synjan postituslista
  Tilaa lista eGroups in 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 YOURLASTNAME in the subject and body of the message.

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For Families

• CHD-UK
  This list has been set up for families and sufferers of Congenital Heart Defects within the United Kingdom.
• Families with Heart
  This group is based in New Hampshire and is for families of children with Congenital Heart Defects.
• GPCHD: Grandparents of Children and Adults with Congenital Heart Defects
  Congenital Heart Information Network (CHIN)'s listserv for grandparents. This list is open only to CHIN members. Please see CHIN's listserv directory for more information.
• Grandparents of CHD
  This list has been set up for grandparents of children living with Congenital Heart Defects.
• HeartlandHearts
  This list is for Congenital Heart Defect patients living in the Midwest and their families.
• hearts2gether
• Herzkinderforum—German language list for families of children with Congenital Heart Defects. Please e-mail bernd.asselborn@koeln.netsurf.de.
• HLHS: 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)'s listserv for families and individuals dealing with heart and heart lung transplant issues. This list is open only to CHIN members. Please see CHIN's listserv directory for more information.
• Kawasaki Syndrome
  This list primarily serves 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 message body.
• L-TGA
  This is a support group for adults or parents w/children with Congenitally Corrected Transposition of the Great Arteries (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.
• Parents for Heart
  Parents for Heart provides mutual support and education for parents of children who have congenital heart defects, hypertension or acquired heart problems. Some children are awaiting or have had surgery. For some, no corrective treatment is available or needed at this time. Our members have gone through experiences similar to yours and can offer their support and share their experiences. To view the Parents for Heart brochure, please click here.
• 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
  Congenital Heart Information Network (CHIN)'s listserv for families of children with Congenital Heart Defects. This list is open only to CHIN members. Please see CHIN's listserv directory for more information.
• PTCHD
  Congenital Heart Information Network (CHIN)'s listserv for parents of teens and young adults with Congenital Heart Defects, and interested health professionals. This list is open only to CHIN members. Please see CHIN's listserv directory for more information.
• SACHD
  Congenital Heart Information Network (CHIN)'s listserv for parents of school age children with Congenital Heart Defects. This list is open only to CHIN members. 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.

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Grief/Loss

• CHDL: Congenital Heart Disease Loss Support
  Congenital Heart Information Network (CHIN)'s listserv for families who are coping with the loss of a loved one. This list is open only to CHIN members. Please see CHIN's listserv directory for more information.
• Grieving Hearts
  The Kids With Heart list for people who have lost loved ones to Congenital Heart Defects.
• HeartlandHeartsAngels
  For families who have lost a child to congenital heart disease (CHD).