DHHS Internet Website - Public Health

Newborn Screening in Nebraska
Links and Resources
All outside links open in a new browser window.

Relevant Nebraska Statutes and Regulations

• Consent Regulation - Title 181 Chapter 5
• Consent Statute - Neb. Rev. Stat. §71-1,104.01
• Newborn Screening Regulation - Title 181 Chapter 2
• Newborn Screening Statute - Neb. Rev Stat. 71-519

National Resources

• AmericanAcademy of Pediatrics - www.aap.org
• Genetic Alliance - www.babysfirsttest.org
• Secretary's Advisory Committee on Heritable Diseases in Newborns and Children- www.hrsa.gov/mchbadvisory/heritabledisorders/index.html
• March of Dimes - www.marchofdimes.org
• National Center for Education in Maternal and Child Health - www.ncemch.org
• National Newborn Screening & Genetics Resource Center -                  http://genes-r-us.uthscsa.edu/
• National Organization for Rare Disorders - www.rarediseases.org
• Genetic Home Reference - http://ghr.nlm.nih.gov
• Parent Education Modul -:  http://online.x-plain.com/client/public_runprint_k3
• Scroll down and click on Parent Education Modules.  You can see an audio-visual presentation on newborn screening and information certain conditions.
• Save Babies Foundation - www.savebabies.org

National Publication

• Newborn Screening: Toward a Uniform Screening Panel and System - www.mchb.hrsa.gov/screening/

Family Support/Advocacy/General Information

• American Sickle Cell Anemia Association - www.ascaa.org
• American Thyroid Association - www.thyroid.org
• Children's PKU Network - www.pkunetwork.org
• Congenital Adrenal Hyperplasia Research Education and Support (CARES Foundation) - www.caresfoundation.org
• Cooley's Anemia Foundation, Inc. - www.thalassemia.org
• Cystic Fibrosis Foundation - www.cff.org
  • http://www.cff.org/AboutCF/Testing/NewbornScreening/
• FOD Family Support Group - www.fodsupport.org
• Genetic Alliance - www.geneticalliance.org
• Maple Syrup Urine Disease (MSUD) Family Support Group - www.msud-support.org
• National Urea Cycle Disorders Foundation - www.nucdf.org
• Parents of Galactosemic Children, Inc. - www.galactosemia.org
• Save our Babies - www.savebabies.org
• Sickle Cell Disease Association of America, Inc. - www.sicklecelldisease.org
• The Magic Foundation - www.magicfoundation.org
• Genetic Alliance - www.geneticalliance.org
• Babys First Test - www.babysfirsttest.org
• National PKU Alliance / My PKU Binder - www.npkua.org/index.php/my-pku-binder