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General Information and Resources Photo: A baby playing with a laptop

Genetic Alliance
Genetic Alliance is a 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.

Genetic and Rare Diseases Information Center (GARD)
GARD is a collaborative effort of two agencies of the National Institutes of Health, The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) to help people find useful information about genetic conditions and rare diseases.

Health Resources and Services Administration (HRSA)
The Health Resources and Services Administration (HRSA), an agency of the Department of Health and Human Services, improves access to health care services for people who are uninsured, isolated, or medically vulnerable. HRSA provides leadership and financial support to health care providers in every state and U.S. territory.

March of Dimes
The March of Dimes is dedicated to improving the health of babies by preventing birth defects, premature birth and infant mortality. The website provides information about specific conditions and resources.

National Organization for Rare Disorders (NORD)
NORD is 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.

University of Kansas Medical Center Genetics and Rare Conditions Site
The University of Kansas offers advocacy and support groups, information on genetic conditions and birth defects for professionals, educators, and individuals.

Resources for Health Professionals

Ethical, Legal, Social Implications & Issues of Human Genome Project (ELSI)
The University of Kansas provides resources on ethical, legal, and social issues related to the Human Genome Project, including policy papers, laws, and information on genetic testing, insurance, privacy and nondiscrimination.

By providing current information on genetic testing and its use in diagnosis, management, and genetic counseling, GeneTests promotes the appropriate use of genetic services in patient care and personal decision making.

  • GeneReviews
    Expert-authored peer-reviewed disease descriptions
  • Laboratory Directory
    International directory of genetic testing laboratories
  • Clinic Directory
    International directory of genetics and prenatal diagnosis clinics
  • Educational Materials
    Illustrated glossary, information on genetic services, PowerPoint® presentations, annotated Internet resources

Learn.Genetics: Genetic Science Learning Center at University of Utah
The Genetic Science Learning Center is a science and health education program located in the midst of the bioscience research being carried out at the University of Utah.

Genetics and Your Practice from the March of Dimes
This site is designed for health care professionals and can be personalized for those working with the following patient types: preconception/prenatal, infant/children, and adolescent/adult. It provides practical information and resources to assist the busy professional in integrating genetics into their patient care. In addition, users can earn CME Credits by completing the interactive case study at the end of each module on genetic testing, family health history and referral to genetics.

National Coalition for Health Education for Professionals in Genetics (NCHPEG)
NCHPEG works to integrate genetics content into the knowledge base of health professionals and students of the health professions by developing educational tools and information resources that are accessible and useful to the target audience. NCHPEG also provides technical assistance to individuals, organizations, and health professionals who have questions about genetics or genetics education.

National Human Genome Research Institute (NHGRI)
NHGRI conducts a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease. NHGRI supports the development of resources and technology that will accelerate genome research and its application to human health. NHGRI also supports the training of investigators and the dissemination of genome information.

National Newborn Screening and Genetics Resource Center GeNeS-R-US, (Genetic and
Newborn Screening Resource Center of the United States)
GeNeS-R-US provides information and resources in the area of newborn screening and genetics.

Online Mendelian Inheritance in Man (OMIM)
OMIM is a compendium of human genes and genetic phenotypes. The full-text, referenced overviews in OMIM contain information on all known mendelian disorders and over 12,000 genes. OMIM focuses on the relationship between phenotype and genotype.

Professional Organizations Professional woman

American Academy of Family Physicians (AAFP)
AAFP is one of the largest national medical organizations. Its mission is to preserve and promote the science and art of family medicine and to ensure high-quality, cost-effective health care for patients of all ages.

American Academy of Pediatrics (AAP)
AAP is an organization of pediatricians committed to the physical, mental, and social health and well-being for infants, children, adolescents, and young adults. The site provides information on general child health and for more specific guidelines concerning pediatric issues.

American College of Medical Genetics (ACMG)

The ACMG provides education, resources and a voice for the medical genetics profession. To make genetic services available to and improve the health of the public, the ACMG promotes the development and implementation of methods to diagnose, treat and prevent genetic diseases.

American Congress of Obstetricians and Gynecologists and American College of Obstetricians and Gynecologists
The American Congress of Obstetricians and Gynecologists and American College of Obstetricians and Gynecologists is an organization of professionals providing health care to women. It serves as an advocate for quality health care for women, promotes patient education and patient understanding of and involvement in medical care, and strives to increase awareness among its members and the public of the changing issues facing women's health care.

American Society of Human Genetics (ASHG)
ASHG is a professional membership organization for human genetics specialists worldwide. ASHG provides forums to share research results, advance genetic research, educate future professionals and the public, and promote genetic services.

National Birth Defects Prevention Network (NBDPN)
NBDPN is a group of individuals involved in birth defects surveillance, research, and prevention.

National Coordinating Center for the Genetic and Newborn Screening Service Collaboratives (NCC)
NCC focuses on bringing quality genetic and newborn screening services to local communities and building bridges between public health, primary care, geneticists and other specialists, families and consumers.

National Society of Genetic Counselors
The Society 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.

Teratology Society
The Teratology Society is an organization of professionals that promotes research and to provides education and training on the causes, mechanisms, treatment and prevention of birth defects.


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  • Centers for Disease Control and Prevention

    National Center on Birth Defects and Developmental Disabilities

    Division of Birth Defects and Developmental Disabilities

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    MS E-87
    Atlanta, GA 30333
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    TTY: (888) 232-6348
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