Publications
Helpful Resources
For more information on congenital heart disease
MedlinePlus and Congenital Heart Disease
American Heart Association and Congenital Heart Defects
Heart Center Encyclopedia from Cincinnati Children’s Hospital
Quality of Life Issues
Your Child’s Special Needs and Nutrition
Children with Chronic Conditions
Pain and Your Baby
Pain and Your Child or Teen
Agencies and support groups for families with pediatric heart disease
The Congenital Heart Information Network
PediHeart
Mended Little Hearts
Kids With Heart National Association for Children’s Heart Disorders, Inc.
Cardiac Arrhythmias Research and Education Foundation
Children’s Cardiomyopathy Foundation
Kawasaki Disease Foundation
The Children’s Heart Foundation - “It’s My Heart” Handbook for Parents
For information on enhancing children's activity and nutrition
We Can Program
Free videos for children and teens with serious illnesses
Starbright Foundation Games and Videos
For clinical trial information
Children and Clinical Studies
ClinicalTrials.gov
Parent’s Guide to Medical Research from Boston Children’s Hospital
For information on growth and development
Healthy Start, Grow Smart on best practices in early childhood development
Center for Disease Control on Child Development
Infant (0-1 year) Development
Toddler (1-2 years) Development
Toddler (2-3 years) Development
Preschooler (3-5 years) Development
Childhood (6-8 years) Development
University of Michigan Developmental Milestones
Adults with Congenital Heart Disease
Adult Congenital Heart Association
American Heart Association
Marfan Syndrome
NIH on Marfan Syndrome
National Marfan Foundation
Down Syndrome
National Down Syndrome Society
Bereavement
Alliance of Grandparents, a Support in Tragedy (AGAST)
Bereaved Parents of the USA
The Compassionate Friends
Healing Hearts of Bereaved Parents