Education for Families
Newborn Screening Disorders: Online Education
These in-depth, interactive, multimedia patient tutorials cover metabolic (newborn screening) and genetic disorders. They provide accurate, up-to-date information for families and are written in easy-to-understand language. These tutorials were developed through Heartland Pilot Project funding and are published by the Patient Education Institute.
- Biotinidase Deficiency
- Biotinidase Deficiency (Spanish)
- Galactosemia (Spanish)
- MCAD “Medium Chain Acyl-dehydrogenase Deficiency”
- MCAD “Medium Chain Acyl-dehydrogenase Deficiency” (Spanish)
- Muscular Dystrophy – Du Chenne
- Muscular Dystrophy – Du Chenne (Spanish)
- Newborn Screening Test (Spanish)
- Newborn Screening Tests
- Phenylketonuria or PKU
- Phenylketonuria or PKU (Spanish)
- SCAD “Short Chain Acyl-dehydrogenase Deficiency”
- SCAD “Short Chain Acyl-dehydrogenase Deficiency” (Spanish)
Genetics Home Reference, a service of the National Library of Medicine, provides consumer-friendly information about the effects of genetic variations on human health. It includes sections on Genetic Conditions, Newborn Screening, Genes, Chromosomes, a Handbook, Glossary and Resources.
This 10-minute podcast, featuring Dr. Paula Yoon and Dr. Tracy Trotter, discusses why a Family Health History is important for your child’s health, how it may be used by your doctor, and how to obtain a family health history.
For more than 40 years, infants born in the US have been screened for an increasing number of congenital conditions, yet parents are often unaware of the availability and need for newborn screening. This is the foundation for the nation’s first Newborn Screening Clearinghouse (NBSC), which connects millions of parents and healthcare providers with resources and information relevant to more than four million newborns screened annually.
The NBSC increases awareness of newborn screening and improves the understanding and informed decision-making capacity of expectant and new parents, health professionals, industry representatives, and the public. It connects state and regional public health groups in these efforts and facilitate data and resource sharing and provides a central linkage location for access to informational resources and data on quality indicators of newborn screening.
Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
Genetic Alliance’s network includes more than 1,000 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs.