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Information on Newborn Screening, Genetics & Lab Testing

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Genetics Information for Medical Professionals

The National Coalition for Health Professional Education in Genetics (NCHPEG) is an "organization of organizations" committed to a national effort to promote health professional education and access to information about advances in human genetics to improve the health care of the nation.

Genetics & Your Practice Online is designed for health care professionals and has been customized for those working with the following patient types: preconception/prenatal, infant/children, and adolescent/adult. The site provides practical information and resources to assist the busy professional in integrating genetics into their patient care.

Genetics/Genomics Competency Center (G2C2) provides high quality educational resources for group instruction or self-directed learning in genetics/genomics by health care educators and practitioners. The G2C2 solicits, reviews and organizes resources through an interdisciplinary collaborative exchange.


Genetics Information for Consumers

Genetics Home Reference provides consumer-friendly information about the effects of genetic variations on human health.

Know Your Genes is a public service provided by the Genetic Disease Foundation, a 501(c)(3) nonprofit foundation supporting research, education and the prevention of genetic diseases.

The Talking Glossary of Genetics Terms features more than 250 common genetic terms pronounced and explained in an easy-to-understand way by leading scientists and professionals at the National Human Genome Research Institute.


Genetics Information for School Personnel

NORD's High School Curriculum Supplement is a curriculum supplement on rare diseases for high school biology classes that has been developed by a genetic counseling master’s degree student in collaboration with NORD that contains background information for teachers and creative, flexible classroom activities to promote active learning.

The NIH Rare Diseases and Scientific Inquiry curriculum supplement targets grades 6-8. According to the NIH website, students explore how scientists use inquiry to research rare diseases and treatments and to further understand the workings of the human body.

Genetics Education Materials for School Success (GEMSS) is a website that school personnel can use to support students who have genetic conditions.


Genetic Counseling Services

The National Society of Genetic Counselors advances the various roles of genetic counselors in health care by fostering education, research, and public policy to ensure the availability of quality genetic services.

Informed Medical Decisions, Inc. is a nationwide-network of genetics experts available by telephone to help patients and providers harness the power of genetics to achieve the promise of personalized healthcare.


Newborn Screening

Save Babies Through Screening Foundation supports, assists and advocates for disorders that are detectable through filter paper newborn screening; are unlikely to be clinically diagnosed without screening; and cause mental retardation, physical disability and/or death in childhood when left untreated.

National Newborn Screening and Genetics Resource Center provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.


Laboratory Testing

Lab Tests Online is a public resource on clinical lab testing from the laboratory professionals who do the testing.

The Collaboration Education and Test Translation (CETT) Program helps to facilitate the translation of new tests for rare genetic diseases. The programs goals are to translate as many appropriate tests as possible, ensure that the best possible test in light of today’s knowledge is offered and ensure that the test meets the needs of the community.


Cord Blood Banking

The American College of Obstetricians and Gynecologists FAQ on cord blood banking.

 

Cord Blood Banking - Information for Consumers from the US Food and Drug Administration.

 
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