• Newborn Screening – Frequently Asked Questions
  
  • What is a new born screening test?
    
  • What will my baby be tested for?
    
  • What is the chance my baby will have one of these disorders?
    
  • How is the blood test performed?
    
  • Why are these tests done?
    
  • Storage of blood-spot cards
    
  • But my family has no history of these health problems
    
  • How can I have my baby tested for all of these health problems?
    
  • Further Information
    

What happens when a child has one of these disorders – Jackson's Story

Family support and relevant links

Information for Parents Booklet
The South Australian Neonatal Screening Centre has produced an "Information for parents" booklet that can be downloaded by clicking here or on the image to the right.

The following is a list of information and website links that provide further information and support to patients who have a metabolic disorder, and their families.

www.cyh.com
Child and Youth Health South Australia

www.savebabies.org
Save Babies Through Screening Foundation of United States of America

www.savebabiescanada.org
Save Babies Through Screening Foundation of Canada

PKU Information for South Australians
www.pku.8m.com

Support group for families affected with Nonketotic Hyperglycinemia
www.nkh-network.org

National Coalition for PKU
www.pku-allieddisorders.org/

National Urea Cycle Disorders Foundation
www.NUCDF.org/main.htm

International Storage Disease Collaborative Study Group
www.pediatrics.med.umn.edu/isdcsg/main.html

The Montreal Childeren's Hospital
Hyperphenylalaninemia (PKUI) Resource Booklet for Families
blizzard.cc.mcgill.ca/pahdb/handout/handout.htm

United Leukodystrophy Foundation
www.ulf.org

Children's PKU Network
1520 State St., Suit 111
San Diego, CA 92101-2930
Ph: (619) 233 3202
fax: (619) 233 0838
E-mail: pkunetwork@aol.com

National PKU News
www.pkunews.org

PKU of Florida
home1.gte.net/magol/index.htm

National Society for PKU (NSPKU)
web.ukonline.co.uk/nspku

Research Trust for Metabolic Diseases in Children (RTMDC)
Golden Gates Lodge
Weston Road
Crewe, Cheshire, UK CWI 1XN
Ph: 01270 250221
Fax: 01270 250244

The Canadian Society For Metabolic Disease
Sharon Jamieson, Treasurer/Info Co-ordinator
3134 Plimsoll

Coquitlam, British Columbia, Canada V3C 3X6
Ph: (604) 464-1017

PKU Canada Inc. Family Association
Hospital for Sick Children
555 University Avenue
Toronto, Ontario, Canada M5G 1X8
Ph: (416) 813-6356
Fax: (416) 813-5745