Related Links

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  • Advisory Committee on Heritable Disorders in Newborns and Children (SACHNDC)
    The Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) advises the Secretary regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders.
  • Agency for Healthcare Research and Quality (AHRQ)
    The Agency for Healthcare Research and Quality's (AHRQ) mission is to improve the quality, safety, efficiency, and effectiveness of health care for all Americans. As 1 of 12 agencies within the Department of Health and Human Services, AHRQ supports research that helps people make more informed decisions and improves the quality of health care services. AHRQ was formerly known as the Agency for Health Care Policy and Research.
  • American College of Medical Genetics and Genomics (ACMG)
    The American College of Medical Genetics and Genomics (ACMG) is an organization composed of biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other health care professionals committed to the practice of medical genetics.
  • Association of Public Health Laboratories (APHL)
    The Association of Public Health Laboratories (APHL) is the national nonprofit representing governmental laboratories that monitor and detect public health threats, ranging from lead contamination in drinking water to metabolic and genetic conditions in newborns.
  • Baby's First Test
    Baby's First Test is a federally funded, objective, resource that increases awareness and understanding of newborn screening for expectant and new parents, health professionals, industry representatives, and the public. They connect state and regional public health groups and facilitate data and resource sharing. In addition, Baby's First Test responds to emerging technologies and corresponding public health challenges.
  • Bench to Bassinet Program (B2B)
    A major effort launched by the National Heart, Lung, and Blood Institute to learn more about how the heart develops and why children are born with heart problems. The Bench to Bassinet's mission is to accelerate scientific discovery to clinical practice by fostering collaborations of basic, translational and clinical researchers through a flexible program designed to improve outcomes for individuals with congenital heart disease while supporting the needs of the pediatric heart disease research community.
  • Centers for Disease Control (CDC) ( is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC).
  • Children and Clinical Studies
    A resource by the National Heart Lung and Blood Institute (NHLBI), the Department of Health and Human Services (DHHS), and the National Institutes of Health (NIH) that brings together information about the participation and rights of children in clinical research studies.
  • Federal Drug Administration (FDA)
    FDA is responsible for protecting the public health by assuring that foods are safe, wholesome, sanitary and properly labeled; human and veterinary drugs, and vaccines and other biological products and medical devices intended for human use are safe and effective.
  • Genetic Alliance
    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.
  • Health Resources and Services Administration (HRSA)
    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. Comprising six bureaus and 13 offices, HRSA provides leadership and financial support to health care providers in every state and U.S. territory. HRSA grantees provide health care to uninsured people, people living with HIV/AIDS, and pregnant women, mothers and children. They train health professionals and improve systems of care in rural communities.
  • Hunter's Hope Foundation
    Hunter’s Hope Foundation was established to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. In addition, we strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of these fatal illnesses.
  • March of Dimes
    The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Their websites provide information and resources for individuals and health care professionals to help women have healthy pregnancies and healthy babies.
  • National Coordinating Center for the Genetic and Newborn Screening Service Collaboratives (NCC)
    In 2004, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB) awarded grants to establish seven Genetics and Newborn Screening Regional Collaborative Groups (RCs) and a National Coordinating Center (NCC) as part of on-going efforts to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services.
  • National Human Genome Research Institute (NHGRI)
    The National Human Genome Research Institute began as the National Center for Human Genome Research (NCHGR), which was established in 1989 to carry out the role of the National Institutes of Health (NIH) in the International Human Genome Project (HGP). The HGP was developed in collaboration with the United States Department of Energy and begun in 1990 to map the human genome. In 1993, NCHGR expanded its role on the NIH campus by establishing the Division of Intramural Research to apply genome technologies to the study of specific diseases. In 1996, the Center for Inherited Disease Research (CIDR) was also established (co-funded by eight NIH institutes and centers) to study the genetic components of complex disorders. In 1997 the United States Department of Health and Human Services renamed NCHGR the National Human Genome Research Institute (NHGRI), officially elevating it to the status of research institute - one of 27 institutes and centers that make up the NIH.
  • NewSTEPS
    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..
  • NIH-National Heart Lung and Blood Institute(NHLBI)
    The National Heart, Lung, and Blood Institute (NHLBI) provides global leadership for a research, training, and education program to promote the prevention and treatment of heart, lung, and blood diseases and enhance the health of all individuals so that they can live longer and more fulfilling lives. The NHLBI stimulates basic discoveries about the causes of disease, enables the translation of basic discoveries into clinical practice, fosters training and mentoring of emerging scientists and physicians, and communicates research advances to the public. It creates and supports a robust, collaborative research infrastructure in partnership with private and public organizations, including academic institutions, industry, and other government agencies. The Institute collaborates with patients, families, health care professionals, scientists, professional societies, patient advocacy groups, community organizations, and the media to promote the application of research results and leverage resources to address public health needs. The NHLBI also collaborates with international organizations to help reduce the burden of heart, lung, and blood diseases worldwide.
  • National Institute of Child Health and Human Development (NICHD)
    The NICHD was initially established to investigate the broad aspects of human development as a means of understanding developmental disabilities, including intellectual and developmental disabilities, and the events that occur during pregnancy. Today, the Institute conducts and supports research on all stages of human development, from preconception to adulthood, to better understand the health of children, adults, families, and communities.
  • NIH-National Library of Medicine (NLM)
    The National Library of Medicine (NLM), in Bethesda, Maryland, is a part of the National Institutes of Health, US Department of Health and Human Services (HHS). Since its founding in 1836, NLM has played a pivotal role in translating biomedical research into practice. It is the world's largest biomedical library and the developer of electronic information services that deliver trillions of bytes of data to millions of users every day. Scientists, health professionals, and the public in the US and around the globe search the Library's online information resources more than one billion times each year. The Library is open to all and has many services and resources--for scientists, health professionals, historians, and the general public. NLM has nearly 12 million books, journals, manuscripts, audiovisuals, and other forms of medical information on its shelves, making it the largest health-science library in the world.
  • National Newborn Screening and Genetics Resource Center (NNSGRC)
    The National Newborn Screening and Genetics Resource Center (NNSGRC) provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.
  • National Organization for Rare Disorders (NORD)
    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.
  • National Society of Genetic Counselors (NSGC)
    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.
  • NIH-Office of Rare Diseases Research (ORDR)
    The ORDR aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.
  • The Pediatric Heart Network (PHN)
    The Pediatric Heart Network is a collaboration of clinical sites and a data coordinating center that conducts research studies in children with congenital or acquired heart disease. The PHN was created and funded in 2001 by the National Heart, Lung and Blood Institute (NHLBI) to improve outcomes and quality of life in children with heart disease. Centers with experienced research teams at hospitals that specialize in the care of pediatrics patients with heart disease were chosen to become part of the PHN.
  • Save Babies Through Screening Foundation
    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.