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Other Sites of Interest Related to Newborn Screening and the Disorders Detectable Through It
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Family-Based Disease Support Groups

• American Sickle Cell Association
• Biotinidase Deficiency Family Support Group
• CARES Foundation (Congenital Adrenal Hyperplasia)
• Children's PKU Network
• Cochrane Cystic Fibrosis & Genetic Disorders Group
• Cystic Fibrosis Foundation
• Family Friendly Health & Recreation Topics (for families with special needs)
• Fatty Oxidation Disorder Family Support Group
• International Organization for Glutaric Acidemia
• IVA Family Support Group
• MSUD Family Support Group
• National Urea Cycle Disorders Foundation
• NKH International Family Network (Nonketotic Hyperglycinemia)
• Organic Acidemia Association
• Parents of Galactosemic Children
• United Mitochondrial Disease Foundation

NOTE: If a support group doesn't currently exist for your disorder, you may want to consider starting one. You should check with the organizations like the Genetic Alliance or American Self Help Group Clearing House to find out if they have a group listed for your disorder that you could join, and, if not, they can help guide you in how to start one.

General Support Resources

• Exceptional Parent Magazine
• Mercy Medical Airlift
• MUMS - National Parent-to-Parent Network
• Needy Meds
• New Jersey Catastrophic Illness in Children Relief Fund Commission
• The Medicine Program
• Free Medicine Program

Bereavement Resources

• Sherokee Ilse's Coalition for Positive Outcomes in Pregnancy Website
• Bereaved Parents
• EternaLight Memorial

Newborn Screening Organizations and Services

• NeoGen Labs - Providing newborn screening (NBS) for babies born in India
• Institute of Research in Mental and Neurological Handicap - Located in India - Services and information related to genetic disorders
• International Society for Neonatal Screening
• Metabolic Screening Laboratory -Research Centre of King Faisal Specialist Hosptial in Riyadh, Saudi Arabia
• 2M Associates - Healthcare Division for Newborn Screening - Providing NBS services throughout India and the United Arab Emirates (UAE)

National Newborn Screening and Genetics Resource Center (NNSGRC)

NNSGRC: GeNeS-R-US (Genetic and Newborn Screening Resource Center of the United States)

Regional Newborn Screening Collaborative Groups

National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups (NCCRCG)

• Region 1: New England Regional Genetics Group, Inc. (NERGG) Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island and Vermont
• Region 2: The New York Mid-Atlantic Region (NYMAC) Delaware, Maryland, New Jersey, New York, Pennsylvania, Virginia, Washington, D.C. and West Virginia
• Region 3: Southeastern Regional Genetics Group TN, Inc. (SERGG) Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolna, Puerto Rico, South Carolina, Tennessee and the Virgin Islands
• Region 4: The Region 4 Genetics Collaborative Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio and Wisconsin
• Region 5: Heartland Genetics and Newborn Screening Collaborative Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma and South Dakota
• Region 6: Mountain States Genetics Regional Collaborative Center Arizona, Colorado, Montana, Nevada, New Mexico, Texas, Utah and Wyoming
• Region 7: Western States Genetic Services Collaborative Alaska, California, Guam, Hawaii, Idaho, Oregon and Washington

Medical/Professional Organizations

• American Academy of Pediatrics
• American Association for the Advancement of Science
• American College of Medical Genetics
• American College of Obstetricians and Gynecologists
• American Hospital Association
• American Medical Association
• American Public Health Association
• Association of Public Health Laboratories
• Association of State and Territorial Health Officials
• Genetics Societies

Consumer Health Organizations

• American Liver Foundation
  • galactosemia
• Arc of the United States
• Healthy Mothers Healthy Babies Coalition
  • frequently asked questions about newborn screening
• Genetic Alliance
• March of Dimes
• National Organization for Rare Disorders (NORD), Inc.
  • 5 Oxoprolinuria
  • Cystic Fibrosis
  • Galactosemia
  • Glucose-6-Phosphate Dehydrogenase Deficiency
  • Glutaricaciduria I
  • Glutaricaciduria II
  • Hypothyroidism
  • Maple Syrup Urine Disease
  • Medium Chain Acyl CoA Dehydrogenase Deficiency
  • Phenylketonuria
  • Sickle Cell Disease
  • Tyrosinemia
• Organization For Endocrine & Metabolic Diseases

Government Agencies

• Centers for Disease Control
• Maternal and Child Health Bureau
• National Institutes of Health

Reports and Articles for Research

• ACMG/HRSA National Recommendations for Newborn Screening (March 8, 2005)
• American Academy of Pediatrics Endorses ACMG Recommendation to Screen for 29 Diseases (May 12, 2005)
• A New Era in Newborn Screening (Dec. 1. 1998)
• Complete Insurance Coverage in Newborn Screening: The Case of PKU Dietary Coverage
• Controversial Legal or Ethical Issues - Newborn Screening and Early Discharge of Mothers and Newborns
• Database on GALT mutations - Extensive compilation of all the mutations and polymorphisms reported in the scientific literature
• Database on Genetic Policy and Laws USA - National Human Genome Research Institute
• Newborn Screening for Sickle Cell Disease Update - CDC Office of Genetics and Disease Prevention (August 18, 2000)
• Newborn Screening Report Addresses Inconsistencies and Controversies (August 7, 2000)
• Newborn screening with tandem mass spectrometry: 12 months' experience in NSW Australia (December, 1999)
• Publications from PacNoRGG - Including Spanish Versions
• SIDS Alliance Pushes for States to Pass Standardized Autopsy and Death Scene Protocols for Cases of Sudden, Unexpected Infant Death (1998)
• State Supreme Court Upholds Metabolic Screening Law - Nebraska (March 25, 2005)
• 1995 List of Disorders Screened by Each State
• Using Tandem Mass Spectrometry for Metabolic Disease Screening Among Newborns (April 13, 2001)
• US National Screening Status Report (July, 2000)
• Your Baby's First Test - flash video by Maryland Family Health Administration

Related Resources

• AboutNewbornScreening.com
• Cerebral Palsy - Ask the Doctor
• Cerebral Palsy Directory
• Connecticut Newborn Screening - FREE program for Continuing Education Credits for health care professionals in Connecticut
• Everybody Has Something - book for young readers written by the parent of a child with PKU
• NewbornScreening.com
• PerkinElmer Life and Analytical Sciences - Reagents, instrumentation and LIMS software supplier for screening programs
• PHG Foundation - Cambridge, UK (Formerly: Public Health Genetics)
• SimulConsult, Inc. - Medical diagnostic software for medical professionals
• The Differential Diagnosis of Child Abuse - Certain metabolic disorders can mimic child abuse

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