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After her two children were diagnosed with a rare genetic condition, Sharon Terry dedicated her life to creating systems-level solutions that will alleviate burdens for consumers and build opportunities for them to be empowered in their own health care. She is the CEO of Genetic Alliance, an international non-profit organization, now in its 25th year, that is the world's largest network of health related organizations working from a consumer perspective. Genetic Alliance builds capacity within the genetics and health community by forging novel partnerships, promoting informed decision-making, and sharing individual, family, and community perspectives.

The STAR-G Project has put together fact sheets about disorders commonly screened for by newborn screening. The fact sheets were written specifically for families that have received an initial diagnosis of one of the disorders and want to know more general information. They address issues and answer questions that are of particular concern to parents. Each fact sheet was written by a genetic counselor and reviewed by metabolic and genetic specialists.

Gene Screen BC 2011 Participant. 18 Things You Should Know About Genetics is an animated film that presents fundamental background information about genetics, as well as offering some quirky but interesting facts about DNA, genes and genetics. It was created to be an upbeat, fun educational short film to initiate and draw interest to this sometimes daunting and seemingly complex subject matter.

Newborn genetic screening is a health program that identifies treatable genetic disorders in newborn infants. Early intervention to treat these disorders can eliminate or reduce symptoms that might otherwise cause a lifetime of disability.

I'm a carrier of a Jewish genetic disease. With that, here's my journey, which will explain why I'm so passionate about advocating for JScreen-a national organization that focuses on education and screening for Jewish genetic diseases.

In a unique twist on human genomics studies that seek to identify genetic variants linked to human disease, researchers have combined whole-exome sequencing of 50,726 adults with the individuals' long-term electronic health record (EHR) data. The effort, by researchers at the Geisinger Health System in Pennsylvania and Regeneron Genetics Center, a subsidiary of New York-based Regeneron Pharmaceuticals, has yielded novel disease-linked variants, including loss-of-function alleles. The team behind the project, called DiscovEHR, has also found that about one in 30 of the individuals harbors a deleterious genetic variant for which a screen or treatment already exists. The group's analysis is described in two papers published today (December 22) in Science.

The mouse is the leading organism for disease research. A rich resource of genetic variation occurs naturally in inbred and special strains owing to spontaneous mutations. However, one can also obtain desired gene mutations by using the following processes: targeted mutations that eliminate function in the whole organism or in a specific tissue; forward genetic screens using chemicals or transposons; or the introduction of exogenous transgenes as DNAs, bacterial artificial chromosomes (BACs) or reporter constructs. The mouse is the only mammal that provides such a rich resource of genetic diversity coupled with the potential for extensive genome manipulation, and is therefore a powerful application for modeling human disease.

Around one in every 500-700 newborns has a condition that can be detected through newborn screening.  Site has screening resources

Story of Aiden's Law, new genetic disorder that newborns in NY will be screened for.

This video excerpt from NOVA examines the dilemma some people face when they are deciding whether to undergo genetic testing. Journalist Catherine Elton describes her decision to refuse a test for BRCA1, a mutation that signals an increased risk of breast and ovarian cancers, despite the history of disease in her family. The video also explains that genetic testing results can help some individuals improve their wellness, prevent the onset of diseases they are at risk for, or lessen the harmfulness of diseases they do contract.

What if sideline rage could be nipped in the bud with a quick genetic test that told Mom and Dad what sports - if any - Junior could master? The Boulder, Colo., company Atlas Sports Genetics today began selling just that sort of product: for $149, it says it will screen for variants of the gene ACTN3

Datasheet of newborn screening test by state

These interactives are longer than one or two screens. They lead the student through a new experience.