About PAG

 

General Information on the Parent Advisory Group

Who we are:
The Parent Advisory Group (PAG) of the National Birth Defects Prevention Network (NBDPN) was formed in 2012 joining five parent representatives and NBDPN members.

What we do:
The Parent Advisory Group (PAG) seeks to increase awareness birth defects for the public and medical community audiences. They also advocate increasing funding for research and surveillance which is decreasing yet birth defect prevalence is increasing. The PAG encourages working with law makers and creating a stronger voice in Congress in order to see more changes.

Why?:
About one in every 33 babies is born with a birth defect. Not all birth defects can be prevented. But a woman can take steps to increase her own chance of having a baby with the best health possible. Research is crucial in preventing birth defects. 1 in 5 deaths due to BD; Average lifetime cost approx. $700,000 with spina bifida

Family Support:
Having a child with a birth defect can affect the entire family. It might be helpful to talk with families or other people who are affected by the same type of birth defect as you or your family member. Other people might have learned how to address some concerns and questions you have. Often, they can give you advice about good resources and share what worked best for them. Talking with other people may also provide emotional support and hope for the future.

Kayte Thomas, CAO Avery's Angels and mother of Ashley
"As a social worker, I love being part of grass-roots advocacy efforts, so joining the PAG was an exciting way to be an advocate not only for my own child, but for countless other children born with birth defects in the United States as well. Incorporating parent insights into discussions about healthcare is essential to establishing an open dialogue with legislators, academia, and researchers that will truly impact our children's care."