General Information

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 and concerned with newborn screening issues.

Consumer Organizations / Support Groups 

Links to patient/consumer oriented sites focused on genetic disorders and issues.


Policies

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.


References and Tools

Glossaries and 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.

Newborn Screening Programs (Map). Newborn screening contact information by state.