Resources

National Center on Birth Defects and Developmental Disabilities
Operated by the CDC, this is home to a wealth of information on birth defects – what they are, what causes them, how to care for them and the steps you can take to prevent them.

National Association for Rare Disorders
This extensive website offers information on hundreds of rare diseases, including birth defects. Parents will appreciate it for the list of support organizations specific to each ailment.

Birth Defect Research for Children
This non-profit serves as a resource for parent information, and it also operates the National Birth Defect Registry. This unique registry aims to learn more about birth defects by identifying the patterns in their occurrence. Founders Mike and Betty Mekdeci have a history with birth defects that dates back to the birth of their son in 1975.

The Arc
This site advocates for those with physical and intellectual disabilities and provides support to families dealing with autism, Down syndrome, fetal alcohol disorder and other ailments. The organization’s mission statement aims to defend human rights and make sure all people are represented in society, no matter their illness.

March of Dimes
A globally known organization that promotes healthy babies and children.

The Compassionate Friends
The Compassionate Friends was founded to offer support to parents and other family members who have suffered through the loss of a child. Chapters exist across the country where parents meet to support one another and talk about their grief as a means of healing.

American Heart Association
Heart defects are the most common type of congenital defect. The venerable American Heart Association has compiled extensive online resources for those looking for information on anything to do with heart defects.

Spina Bifida Association
The neural tube defect spina bifida affects about 1,500 babies each year, and this association was formed as a resource for affected family members.

Cleft Palate Foundation
Plenty of information here on the most common congenital defect, which affects about 1 in every 600 babies.