NBS Resources


Frequently Used Forms

Educational Materials

Program Overview

General Resources

Baby’s First Test
Contains information regarding specific disorders as well as state-specific information.

Save Babies Through Screening Foundation, Inc.
A parent resource on Newborn Screening provides information for parents including disease descriptions, information regarding screening in other states, a resource library, family stories, and more.

March of Dimes

American Academy of Pediatrics (National)
A global, nonprofit, standards-developing organization that promotes the development and use of voluntary consensus standards and guidelines within the healthcare community.

Georgia Chapter: American Academy of Pediatrics
Contains newborn screening fact sheets and other policy statements.

Genetics Home References
A genetics information resource for healthcare providers and parents.

National Organization for Rare Disorders (NORD)
A federation of non-profit voluntary health organizations dedicated to helping people with rare diseases and assisting the organizations that serve them. NORD provides a database of over 1,000 rare disorders and their support groups.

Cystic Fibrosis Resources

Krabbe Disease Resources

Laboratory Resources

Georgia Public Health Laboratory


Clinical and Laboratory Standards Institute (CLSI)

Emory Genetics Laboratory

The information site for patients and physicians regarding laboratory testing and clinical genetic services offered through the Department of Human Genetics at Emory University.

Expanded Newborn Screening Using MS/MS

The website for a multi-state collaborative project that addresses the financial, ethical, legal, and social issues (FELSI) surrounding the use of MS/MS (tandem mass spectrometry) for neonatal metabolic screening.

Sickle Cell Resources

The Sickle Cell Information Center
Provides sickle cell patient and professional education, news, research updates, and worldwide sickle cell resources.

Sickle Cell Foundation of Georgia
Contains hemoglobin fact sheets and information regarding services offered by the Foundation.

Sickle Cell Disease Facts Sheets
Fact sheets on Sickle Cell Disease courtesy of the Centers for Disease Control and Prevention (CDC).  Topics include living well with SCD, pregnancy, and sickle cell trait.

Support Groups

CCHD Resources

Baby’s First Test
Provides general information about CCHD and Newborn Screening.

Children’s Heart Foundation (National)
Helps raise money to fund CCHD research as well as advocate for important CHD issues.

Georgia Chapter: Children’s Heart Foundation
Aids in fundraising for CHD research, advocating for Georgia heart families and promoting CHD awareness throughout the state.

Provides educational information and resources regarding CCHDs.

Kids with Heart
Provides support, education, and resources to those with CCHDs.

Congenital Heart Defects Toolkit
The toolkit includes materials for Pediatricians and family physicians (who treat children), Internal medicine physicians and family physicians (who treat adults), Obstetrician-gynecologists, and Emergency room physicians.  The toolkit is courtesy of the American Academy of Pediatrics.


Page last updated 2/8/2024