Genetic Conditions

• Chromosome Deletion Outreach, Inc. (CDO) -

  The mission of the CDO is to provide support to parents of children born with rare chromosome disorders, gather together and share information, and to promote research and a positive community understanding of these disorders. http://www.chromodisorder.org
  



• GeneTests -

  GeneTests is an NIH-funded medical genetics testing information resource comprising:
  - GeneReviews: Over 359 expert-authored, peer-reviewed, current disease descriptions focused on the role of genetic testing in the care of patients with specific inherited conditions
  - Laboratory Directory: List of tests for about 1306 inherited disorders offered by 608 US and international laboratories
  - Clinic Directory: List of about 1145 US and international genetics clinics
  - Educational Materials: An illustrated glossary, an introduction to genetic counseling and testing concepts, and links to other Internet resources.
  www.genetests.org



• Genetic Alliance -

  Genetic Alliance is an international coalition comprised of more than 600 advocacy, research and healthcare organizations that represent millions of individuals with genetic conditions and their interests.
  www.geneticalliance.org



• Genetics Education Center, Kansas University Medical Center -

  Genetic conditions and support groups for individuals and families with genetic conditions or birth defects, genetic counselors, clinical geneticists, and medical geneticists.
  www.kumc.edu/gec/support



• Healthfinder -

  Healthfinder is a free guide to reliable health information. This web site is a service of the U.S. Department of Health and Human Services.
  www.healthfinder.gov



• Madisons Foundation -

  Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication amongst parents, physicians and medical experts. Madisons Foundation has compiled a database of rare pediatric diseases. Database entries describe symptoms, available treatments and additional sources of information and support.
  www.madisonsfoundation.org



• The MCH Neighborhood, administered by the Institute for Child Health Policy -

  is a portal for important resources and web sites related to maternal and child health.
  The MCH Neighborhood, administered by the Institute for Child Health Policy



• 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. We carry out this mission through research, community services, education and advocacy to save babies' lives. March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birthweight.
  www.marchofdimes.com



• The MCH Neighborhood, administered by the Institute for Child Health Policy -

  is a portal for important resources and web sites related to maternal and child health.
  The MCH Neighborhood, administered by the Institute for Child Health Policy



• Medline Plus Health Information -

  MedlinePlus will direct you to information to help answer health questions. MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations. Preformulated MEDLINE searches are included in MedlinePlus and give easy access to medical journal articles. MedlinePlus also has extensive information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news.
  medlineplus.gov



• National Organization for Rare Disorders, Inc. (NORD) -

  NORD provides information on rare diseases and patient organizations. The Rare Disease Database on its web site provides reports for patients and families on more than 1,150 rare diseases. The Organizational Database provides information on more than 1,400 patient organizations, registries, and foundations, and how to contact them.
  www.rarediseases.org



• National Newborn Screening & Genetics Resources Center -

  a national resource center for information and education in the areas of newborn screening and genetics, funded by HRSA.
  genes-r-us.uthscsa.edu/index.htm



• New York Online Access to Health (NOAH): Genetic Disorders -

  NOAH provides access to high quality full-text consumer health information in English and Spanish that is accurate, timely, relevant and unbiased.
  www.noah-health.org/en/genetic/



• Online Mendelian Inheritance in Man(OMIM) -

  This database is a catalog of human genes and genetic disorders authored and edited by Dr. Victor A. McKusick and his colleagues at Johns Hopkins and elsewhere, and developed for the World Wide Web by NCBI, the National Center for Biotechnology Information.
  www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM

Genetics Education

• Access Excellence -

  Launched in 1993, AE is a national educational program that provides high school biology and life-science teachers access to their colleagues, scientists, and critical sources of new scientific information via the Internet.
  www.accessexcellence.com

• Community of Genetic Educators -

  From the National Human Genome Research Institute, the Community of Genetic Educators website is a place for genetic educators to meet, collaborate, share and learn.
  www.coge.nih.gov

• Dolan DNA Learning Center -

  The Dolan DNA Learning Center (DNALC) is the world's first science center devoted entirely to genetics education and is an operating unit of Cold Spring Harbor Laboratory, an important center for molecular genetics research.
  www.dnalc.org/home.html

• Genetics Education Center, Kansas University Medical Center -

  Genetic Educational Information for secondary science teachers.
  www.kumc.edu/gec



• Genetics Home Reference -

  the National Library of Medicine's web site for consumer information about genetic conditions and the genes or chromosomes responsible for those conditions.
  ghr.nlm.nih.gov



• Genetic Education Materials Database -

  The Genetic Education Materials (GEM) Database is a searchable listing of public health genetics policy documents and clinical genetics educational materials. It is a project of the National Newborn Screening and Genetics Resource Center (NNSGRC). Funding is provided by the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB).
  gemdatabase.org



• Genetics Resources on the Web (GROW) -

  The mission of the Genetics Resources On the Web (GROW) site and search engine is to optimize the use of the web to provide health professionals and the public with high quality information related to human genetics, with a particular focus on genetic medicine and health.
  http://geneticsresources.org



• Genetics Science Learning Center at the University of Utah -

  The Genetic Science Learning Center is an outreach education program located in the midst of bioscience research at the University of Utah. Their mission is to help people understand how genetics affects their lives and society.
  http://gslc.genetics.utah.edu/



• Genetic Glossaries:

  
  -Easy-to-use, talking glossary of genetic terms, produced by the National Human Genome Research Institute.
  www.genome.gov/glossary.cfm




-Illustrated glossary of medical genetic terms from the GeneReviews website.
www.genetests.org


• National Office of Public Health Genomics (Centers for Disease Control and Prevention, CDC) -

  The Centers for Disease Control and Prevention (CDC), the nation’s primary disease prevention agency, established the Office of Genetics and Disease Prevention in 1997. The office was renamed the Office of Genomics and Disease Prevention (OGDP) in 2003. In 2006, the name was changed again to the National Office of Public Health Genomics (NOPHG). Currently, NOPHG provides national public health leadership, and builds partnerships with other federal agencies, as well as public health organizations, professional groups, and the private sector.
  www.cdc.gov/genomics

• U.S. Department of Energy Office of Science (Genome Programs) -

  Site of the U.S. Human Genome Project, Genomics: GTL Program, and Microbial Genome Program - all sponsored by the U.S. Department of Energy Genome Programs.
  www.doegenomes.org

Information for Genetics Professionals

• American College of Medical Genetics (ACMG) -

  The ACMG provides education, resources and a voice for the medical genetics profession.
  www.acmg.net



• American Society of Human Genetics (ASHG) -

  The American Society of Human Genetics (ASHG), founded in 1948, is the primary professional membership organization for human geneticists in the Americas. Members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses and others involved in or with special interest in human genetics.
  http://genetics.faseb.org/genetics/ashg/ashgmenu.htm



• European Society of Human Genetics (ESHG) -

  The European Society of Human Genetics (ESHG) is an international professional society founded in 1967 which promotes research in basic and applied human and medical genetics and facilitates contact between all persons who share these aims. Members are involved in all disciplines of human genetics, including biochemical, clinical, cancer, molecular and population genetics, cytogenetics and molecular cytogenetics, and genomics.
  www.eshg.org



• Genetics Education Center, Kansas University Medical Center -

  Information for genetic counselors, clinical geneticists, and medical geneticists.
  www.kumc.edu/gec/geneinfo.html



• INFOGENETICS© -

  INFOGENETICS© is designed to assist providers in the daily care of their patients. INFOGENETICS© helps determine how to use the constantly-changing genetics information and testing in clinical care.
  www.infogenetics.org

• International Society of Nurses in Genetics (ISONG) -

  ISONG, the International Society of Nurses in Genetics, is a nursing specialty organization dedicated to fostering the scientific and professional growth of nurses in human genetics. The ISONG vision is: Caring for people's genetic health. The mission is: To foster the scientific, professional, and personal development of members in the management of genetic information.
  www.isong.org



• National Coalition for Health Professional Education in Genetics -

  The mission of NCHPEG is to promote health professional education and access to information about advances in human genetics to improve the health care of the nation.
  www.nchpeg.org



• National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups -

  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 Genetic Service 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 healthcare services.
  www.nccrcg.org

• National Society of Genetic Counselors (NSGC) -

  NSGC is the leading voice, authority and advocate for the genetic counseling profession. The society’s mission is to promote the genetic counseling profession as a recognized and integral part of health care delivery, education, research and public policy.
  www.nsgc.org



• Regional Genetic Networks:
  
  
  • Heartland Genetics and Newborn Screening Collaborative
    

    Arkansas, Iowa, Kansas, Missouri, North Dakota, Nebraska, Oklahoma, and South Dakota.

  
  
  • MARHGN
    

    Mid-Atlantic Regional Human Genetics Network
    (Pennsylvania, New Jersey, Delaware, Maryland, Washington D.C., West Virginia, Virginia)

  
  
  • NERGG
    

    New England Regional Genetics Group
    (Maine, Vermont, New Hampshire, Massachusetts, Rhode Island, Connecticut)

  
  
  • PacNoRGG
    

    Pacific Northwest Regional Genetics Group
    (Washington, Oregon, Idaho, Alaska)

  
  
  • PSRGN
    

    Pacific Southwest Regional Genetics Group
    (California, Nevada, Hawaii)

  
  
  • SERGG
    

    Southeastern Regional Genetics Group
    (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, Puerto Rico, South Carolina, Tennessee, and the Virgin Islands)

  
  


• Genetics & Your Practice Online -

  a genetics education program and information resource from the March of Dimes designed for primary care professionals. The site provides practical "how-to" information and downloadable tools to help busy health care professionals integrate genetics into their current practice. Three free CME credits are available upon the completion of interactive case studies.
  www.marchofdimes.com/gyponline