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 Information and Resources
This site is published by the Congenital Heart Information Network (CHIN).
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.
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).
For Families
CHD-UK
This list has been set up for families and sufferers of Congenital Heart Defects within the United Kingdom.
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.
HeartlandHearts
This list is for Congenital Heart Defect patients living in the Midwest and their families.
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 Disease
The Kawasaki Disease Foundation is a partnership of parents, patients, and professionals dedicated to advancing Kawasaki Disease issues. The Foundation focuses on awareness, support, and research
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.
Pulmonary Hypertension Association Lists: The PHA runs several lists for people affected by pulmonary hypertension:
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.