General Resources

State Newborn Screening & Genetics Programs

US Newborn Screening Programs Map of the US with links to information on each state's newborn screening program and website.

NBS State Contact Information PDF file containing contact information for the laboratory and follow-up coordinators in each state's and territory's newborn screening program.

US Genetics Programs Map of the US with links to information on each state's genetics program.

Collaboratives Regional genetics and newborn screening collaboratives: Map of the US with links to contact information and websites for each regional collaborative.

NCCRCG National Coordinating Center for the Genetics and Newborn Screening Regional Collaboratives.

Government and Organizations

Government Links Links to government websites containing information on newborn screening. (HRSA, CDC, NIH, etc)

Professional Health Care Organizations Links to professional organizations involved in newborn screening and genetic issues.

Consumer Organizations / Support Groups Links to patient/consumer oriented sites focused on genetic disorders and issues.

Policy Links - Professional Organizations Links to the newborn screening and genetics related policies of various professional organizations.

Policies and Laws - Public Health Genetics Links to policies and laws in public health genetics.

Reference Services Links to a variety of reference websites such as genetic glossaries, libraries, and databases. HHS Community Health Indicators Resource Contains health indicator data for every county in the US Family Health Portrait Family History Tool from the Surgeon General GAPPNet Genomic Applications in Practice and Prevention Network aims to accelerate and streamline effective and responsible use of validated and useful genomic knowledge and applications, such as genetic tests, technologies, and family history, into clinical and public health practice.

HRSA Resources

GENE Project: Genetics Education Needs Evaluation (GENE) Project (2005); Five year initiative aimed at improving access to genetics information. .. ----Literature Review: Genetics Education and Underserved Population

GeneticTools Genetics in Primary Care teaching cases. Each case provides learning objectives; identifies family history issues and red flags; reviews clinical care issues, risk assessment, and testing; and discusses the relevant ethical, social, legal, and cultural issues.

Genetics Literacy Project Literature and Materials Review (2001) This working report considers how various actors, such as researchers, practitioners, journalists, etc produce and disseminate information about genetics and health.

Genetic Services Policy Project The Genetic Services Policy Project (GSPP) aims to describe the current model of genetic services delivery, collect information from key stakeholders, and use stakeholder perspectives to translate genetics research into practice that will lead to more effective genetic service delivery models.

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