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September 9, 2005
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Resources for Patients
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General Information
National Newborn Screening and Genetics Resource Center
1912 W. Anderson Lane, Suite 210
Austin, TX 78757 
(512) 454-6509
Provides information and resources on newborn screening. Lists newborn screening tests by state.

Save Babies Through Screening Foundation
4 Manor View Circle
Malvern, PA  19355
(888) 454-3383
Provides information on newborn screening to parents and the medical community.

About Newborn Screening
Promotes the expansion of government-mandated screening programs. Lists newborn screening tests by state.

American Academy of Pediatrics
141 Northwest Point Boulevard
Elk Grove Village, IL 60007 
(847) 434-4000


Information on Specific Conditions
American Sickle Cell Anemia Association
10300 Carnegie Avenue
Cleveland, OH 44106
(216) 229-8600

Genetic Alliance
4301 Connecticut Avenue, N.W., Suite 404
Washington, DC 20008
(202) 966-5557
Supports individuals with genetic conditions and their families.

National Center for Hearing Assessment and Management
Utah State University
2880 Old Main Hill
Logan, UT 84322
(435) 797-3584
Provides resources for both health care providers and families. The center has produced a 6-minute educational video for parents "Giving Your Baby a Sound Beginning," which is available in English and Spanish. The video may be viewed online at no charge, or a VHS copy may be purchased for $15.

National Coalition for PKU and Allied Disorders
P.O. Box 1244
Mansfield, MA 02048
(877) 996-2723

National Urea Cycle Disorders Foundation
4841 Hill Street
LaCanada, CA 91011

 
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Newborn Screening
  March of Dimes Newborn Screening Recommendations
 
  Clinical Issues and Considerations
 
    - Introduction and History
 
    - Collection of Screening Specimens
 
    - Disorders: Description and Sample Screening Methodology
 
    - Results and Follow-up
 
    - Parent Education
 
    - Professional Education
 
    - Frequently Asked Questions
 
    - Glossary of Newborn Screening Acronyms and Abbreviations
 
  What Providers Can Do
 
  Resources for Families
 
    - March of Dimes Information for Families
 
    - Ask the March of Dimes Now
 
    - Other Resources
 
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