Newborn Screening in Nebraska
Links and Resources
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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

• American Academy of Pediatrics - www.aap.org
• Health Resources and Services Agency - www.hrsa.org
• 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 Module:  http://heartland.ouhsc.edu   Scroll down and click on Parent Education Modules.  You can see an audio-visual presentation on newborn screening and information certain conditions.

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
• FOD Family Support Group - www.fodsupport.org
• Genetic Alliance - www.geneticalliance.org
• International Organization of Glutaric Acidemia - www.glutaricacidemia.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