For Caregivers & Families
The resources below are provided for informational purposes only. The presence of a link to or information about an online resource does not represent an endorsement or recommendation by the Adult Congenital Heart Association (ACHA). We make every effort to provide information that is accurate and timely, but make no guarantee in this regard. ACHA assumes no responsibility about the type, amount, and quality of assistance, support or service provided by other agencies or organizations.
We encourage each person to thoroughly review any listed resource to make sure the services provided are appropriate for his/her needs. Each individual should consult with, and rely only on the advice of, his/her ACHD healthcare provider. The linked information is not a substitute for individual advice from an ACHD provider.
Information & Resources
Adoptive Families of America
Baby Hearts Press
Publisher of Hypoplastic Left Heart Syndrome and The Heart of a Mother.
The Children's Heart Foundation
Congenital Cardiology Today
Mended Little Hearts
Pediatric Congenital Heart Association
The Kids With Heart list for people who have lost loved ones to Congenital Heart Defects.
This list has been set up for families and sufferers of Congenital Heart Defects within the United Kingdom.
This list is for Congenital Heart Defect patients living in the Midwest and their families.
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
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.