NCC Partners

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The American Academy of Pediatrics (AAP) is an organization of 60,000 pediatricians committed to the optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults.

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The American College of Medical Genetics and Genomics' mission is to improve health through medical genetics.
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The Association of Maternal and Child Health Programs (AMCHP) is a national resource, partner and advocate for state public health leaders and others working to improve the health of women, children, youth and families, including those with special health care needs

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The Association of Public Health Laboratories (APHL) works with members to strengthen laboratories serving the public’s health.  By promoting effective programs and public policy, APHL strives to provide public health laboratories with the resources to protect the health of US residents and to prevent and control disease globally. 
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The mission of the Discretionary Advisory Committee on Heritable Disorders in Newborns and Children is to reduce morbidity and mortality in newborns and children who have, or are at risk for, heritable disorders.  The DACHDNC will fulfill the functions previously undertaken by the former Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC).


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March of Dimes helps “moms have full-term pregnancies and research(es) the problems that threaten the health of babies.  In local communities across the country, (they are) helping moms take charge of their health, and supporting families when something goes wrong.

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The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare ‘orphan’ diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

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The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) provides quality improvement initiatives for newborn screening systems, an innovative data repository, and technical and educational resources to state newborn screening programs.


The National Center for Medical Home Implementation (National Center) is a cooperative agreement between MCHB and AAP.  The National Center is focused on ensuring that all children and youth receive care within, and have access to, a medical home.  
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Baby's First Test houses the nation's newborn screening clearinghouse. The clearinghouse provides current educational and family support and services information, materials, and resources about newborn screening at the local, state, and national levels and serves as the Clearinghouse for newborn screening information.



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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.


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NICHD conducts and supports laboratory research, clinical trials, and epidemiological studies that explore health processes; examines the impact of disabilities, diseases, and variations on the lives of individuals; and sponsors training programs for scientists, health care providers, and researchers to ensure that NICHD research can continue.


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The National Society of Genetic Counselors (NSGC) promotes the professional interests of genetic counselors and provides a network for professional communications. Local and national continuing education opportunities and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of belonging to the NSGC.


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The Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services, is the primary Federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable.

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The Catalyst Center is a national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN).”  The Center works to develop strategies to: cover more kids, close benefit gaps, pay for additional services, and build strategies.


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The overall vision of the Genetics in Primary Care Institute is to increase primary care provider (PCP) knowledge and skills in providing genetic-based services.  The mission of the GPCI is to work with PCPs in the context of a medical home to enhance such things as understanding of basic genetic principles, collection and interpretation of family history, education regarding new and emerging technologies and tests, navigation of ethical considerations regarding genetics-related issues, and integration of genetic medicine into health information technology.


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The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services  External Web Site Policy , is the nation’s medical research agency—making important discoveries that improve health and save lives.


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The goal of the NBSTRN is to facilitate research to improve the health outcomes of newborns with genetic or congenital disorders through an infrastructure that provides the research community access to robust newborn screening resources.

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The world’s largest biomedical library, NLM maintains and makes available a vast print collection and produces electronic information resources on a wide range of topics that are searched billions of times each year by millions of people around the globe. It also supports and conducts research, development, and training in biomedical informatics and health information technology. In addition, the Library coordinates a 6,000-member National Network of Libraries of Medicine that promotes and provides access to health information in communities across the United States.