NBS 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.

Newborn Screening

•   Georgia Newborn Screening Brochure - English & Spanish
  •   Blood Screening Insert - English & Spanish

•   History of the Newborn Screening Program in Georgia

Newborn Screening Conditions

•   Disorder Specific Information
   
•   Long Term Follow Up Brochure

Hearing 

• EHDI Resources for Families and Providers

Critical Congenital Heart Disease (CCHD)

• 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.
   
• CongenitalHeartDefects.com
  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.

 

Cystic Fibrosis

• Children's Healthcare of Atlanta
   
• Emory Cystic Fibrosis Center
   
• Augusta University Cystic Fibrosis Care Center
   
• Cystic Fibrosis Foundation: Georgia Chapter

Krabbe Disease

• DPH's Krabbe Disease Webpage

MCADD

•   What is MCADD (English)
•   What is MCADD (Spanish)
   

Sickle Cell Disease

• Sickle Cell Disease
  Georgia Department of Public Health's Sickle Cell webpage
   
• 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.
   

VLCADD

•   What is VLCADD (English)
•   What is VLCADD (Spanish)

• PKU Connect
   
• The MAGIC Foundation for Children's Growth (MAGIC)
   
• MSUD Support Group
   
• Parents of Galactosemic Children
   
• Fatty Oxidation Disorder (FOD) Family Support Group
   
• CAH Research, Education, and Support Foundation (CARES)
   
• Sickle Cell Foundation of Georgia
   
• National Organization for Rare Disorders (NORD)

• 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.