Who to Contact
The Children's Heart Society is a non-profit, non-government
funded charitable organization that is totally operated by
volunteers and supports families of children with heart disease.
Our goals are: To work toward the day when no child will die from heart
disease. To ensure the best possible care for children suffering
from heart disease. To improve the quality of life for children and families
living with heart disease. To educate the public about heart disease in children their
We have monthly support meetings, a parent referral list, a bi-monthly newsletter, bereavement
support, and numerous other services, the most important being solid support for families facing a life
with a "heart child."
Kids with Heart
P.O Box 12504
Green Bay, Wi 54307-2504
Their main mission is to provide support, information, and education for the families of the children already living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.
Adult Congenital Heart Association
6757 Greene Street
Philadelphia, Pennsylvania, 19119
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.
Where to Go to Chat with Others
- PTCHD - Parents of Teens with CHD
An online support group and discussion forum for parents of teens and young adults with congenital heart defects and interested health professionals.
A very active online support group and discussion forum for parents, family members and adults with congenital heart defects. If you have a child with CHD, if you have CHD yourself, or if you are a concerned individual, please join us.
- CHDL: Congenital Heart Disease Loss Support
An online support group specifically for families who are coping with the loss of a loved
- HTX - Heart Transplant Support Group
A forum for support and information sharing for families and individuals dealing with
heart or heart-lung transplants due to childhood-onset heart disease. Subscribers facing
the possibility of transplant or otherwise interested in the issues surrounding
transplanted survivors of childhood-onset heart disease are also welcome.
- HLHS - Hypoplastic Left Heart Syndrome
An online support group and discussion forum for families of children with Hypoplastic Left Heart Syndrome and interested health professionals.
- Congenital Heart Defect Support
This group is about raising and supporting each other who have a child/adult with a Congenital Heart Defect. We welcome you and glad that you came by to participate and support one another. You must join to be able to post to this group. Our settings are such to avoid spam problems.
- Down's Heart Group
A contact point for families who have a member with Down's Syndrome and
associated congenital heart disease. Support and information for those whose
child is facing heart surgery, who has had surgery, those whose condition is
inoperable, and those families who are bereaved.
Learn More About It
- Children's Cardiomyopathy Foundation A non-profit organization dedicated to the search for a genetic cause and potential cure for pediatric cardiomyopathy. In addition to supporting critical scientific and medical research, C.C.F. also promotes physician education, public awareness, patient support, and advocacy for affected children and their families.
- Congenital Heart Disease Information and
C.H.I.N. is an international organization that provides reliable information, support services and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.
- Adult Congential Heart Association
National support organization for adults with congenital heart disease.
- Congenital Heart Defects .Com
This site is devoted to providing information to members of the world-wide congenital heart defect (CHD) community.
- The Children's Heart Foundation
The Children's Heart Foundation funds the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.
- Congenital Heart Research Center
The CHRC is dedicated to understanding the role of fetal heart development in congenital heart defects and also how fetal heart development and adult heart disease are linked. The CHRC is committed to the education of physicians, health professionals and the public with respect to the latest findings in congenital heart disease research.
- Children's Heart Federation - United Kingdom
The Children's Heart Federation is the leading children's heart charity and the umbrella body for voluntary organisations working to meet the needs of children and young people with heart conditions and their families.
- American Heart Association