The websites below are sites we feel offer a lot of information on congenital heart defects or they offer support to families. In no way do we endorse any of these. They have just been helpful to us as we searched the Internet.
If you have a website you would like to see added to the list, please contact us.
Cincinnati Children’s Hospital Medical Center’s Heart Encyclopedia
Cincinnati Children's Hospital Medical Center's Heart Center staff compiled this Heart Center Encyclopedia to provide easily accessible information on cardiac diseases, defects, disorders, and problems that may affect a child's heart.
United Network for Organ Sharing (UNOS)
The mission of UNOS is to advance organ availability and transplantation by uniting and supporting communities for the benefit of patients through education, technology and policy development.
The American Heart Association (AHA)
This site provides information about congenital heart defects, types of medical treatment / testing, a glossary of terms and other helpful information.
The Congenital Heart Information Network (TCHIN)
TCHIN provides reliable CHD information, resources, internet links, as well as support for families, adults, and health professionals.
Children’s Cardiomyopathy Foundation
(CCF) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy.
Saving Little Hearts
Saving Little Hearts has been helping children with congenital heart defects and their families since 2002. This organization is dedicated to helping children with congenital heart defects and their families by providing financial and emotional assistance and educational information. Saving Little Hearts also strives to provide enriching, educational and fun experiences for these children which will help them build friendships and confidence.
The Children’s Heart Foundation (CHF)
Founded in 1996, The Children's Heart Foundation funds the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.
Little Hearts, Inc.
Little Hearts, Inc. is a non-profit organization founded in January 1998. Their mission is to offer support and hope to families affected by congenital heart defects through their support services and to promote public awareness for this #1 birth defect.
Mended Little Hearts
Mended Little Hearts, a new support program for parents of children with heart defects and heart disease, is dedicated to inspiring hope in those who care for the littlest heart patients of all. Mended Little Hearts offers resources and a caring support network as families find answers and move forward to find healing and hope.
CHD Awareness Quilt Project
TheCongenital Heart Defect Awareness Quilt Project was created to promote greater public awareness of CHD ’s, while honoring the strength, courage, and commitment of all those born with a CHD and their families.
The Congenital Heart Defect Awareness Quilts are a series of quilts honoring 42 individuals with CHD . The quilts are being constructed of heart blocks, with each block being dedicated to a child or adult affected by Congenital Heart Defects.
Congenital Heart Defects.com
Congenital heart defects are responsible for more deaths in the first year of life than any other birth defects, the National Institutes of Health reports. This site is devoted to providing information to members of the world-wide congenital heart defect (CHD) community. We do not provide medical advice, but we do have information which can supplement what doctors and other professionals provide.
Kids With Heart: National Association for Children’s Heart Disorders
Our organization was formed in 1985 with the main mission of providing support, information, and education for the families of the children living with congenital heart defects and to promote public awareness of the issues that these families live with on a day to day basis.
Toys for Nicholas
Our purpose is to raise funding for research, educational, support and awareness projects which will increase the quality of life in children born with life threatening heart defects.
Aubrey Rose Foundation
Our mission is to help families caring for children with life threatening illnesses with our focus being on the family unity. We strive to lift families from life’s complexities during this difficult time by providing emotional and financial support.
Lauren Faith Miller Foundation
The Lauren Faith Miller Foundation Inc. is dedicated to providing financial and emotional assistance to children with congenital heart defects and their families. We are also dedicated to providing educational materials upon diagnosis of a heart defect.
Kentuckiana Left Hearts
This website was set up by HLHS dad, David Moore, to help other parents that have a child with HLHS (Hypoplastic Left Heart Syndrome). His son, David, has HLHS and is coming up on his Fontan this Spring/Summer. David has also set up two websites that you can order CHD products from through cafepress. You can visit these websites by going to www.cafepress.com/pediatricheartsand www.cafepress.com/hlhs
California Heart Connection
California Heart Connection is committed to providing support and information to those with congenital heart defects. The following articles, handouts and forms are provided as a courtesy to help improve communication between physicians and patients to increase patient understanding of the many issues involved and to improve outcomes of those with congenital heart defects.
Levine Cardiac Kids
Levine Cardiac Kids is a group that supports children who are being treated for, or have recently been diagnosed with, Congenital Heart Defects (CHD) and their families in the North Carolina Area.
OopDooHug
This website doesn't offer CHD information but offers a great product. We all know what the children with CHD's go through and the many bandages they have to deal with having pulled off. An oopdoohug is a soft, colorful wrap (blanket) in the form of a bandage. The white center has an opening to insert a ice or warm pack, too. We received some to put into the care packages we send out and they are so adorable! Please visit the website and see for yourself. This is actually a band-aid that the children don't have to be afraid of!