Centers for Disease
Control, Office of Genomics and Disease Prevention
http://www.cdc.gov/genomics/default.htm
The Centers for Disease Control and Prevention (CDC) established the Office of Genetics and Disease Prevention (OGDP) in 1997 at the National Center for Environmental Health (NCEH).
Folic Acid for the Prevention
of Neural Tube Defects, AAP
http://www.aap.org/policy/re9834.html
Policy Statement, American Academy of Pediatrics
Genetic and Rare Diseases
Information Center
http://rarediseases.info.nih.gov/html/resources/info_cntr.html
Established by the National Human Genome Research Institute and the Office of Rare Diseases, the Genetic and Rare Diseases Information Center employs experienced information specialists to answer questions from the general public, including patients and their families, health care professionals, and biomedical researchers.
National Birth Defects Prevention
Network (NBDPN)
http://www.nbdpn.org/NBDPN/
The National Birth Defects Prevention Network (NBDPN) is a group of individuals involved in birth defects surveillance, research, and prevention.
National Center on Birth Defects
and Developmental Disabilities
http://www.cdc.gov/ncbddd/
The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) seeks to promote optimal fetal, infant, and child development; prevent birth defects and childhood developmental disabilities; and enhance the quality of life and prevent secondary conditions among children, adolescents, and adults who are living with a disability.
National Human Genome Research Institute
www.nhgri.nih.gov
The National Human Genome Research Institute (NHGRI) was originally established in 1989 as The National Center for Human Genome Research (NCHGR). Its mission is to head the Human Genome Project for the National Institutes of Health (NIH).
National Institutes of Health
http://www.nih.gov
The NIH is one of eight health agencies of the Public Health Services which, in turn, is part of the U.S. Department of Health and Human Services.
National Library of Medicine
http://www.nlm.nih.gov
Consumer site, clinical trails, MEDLINE, health groups.
Office of Rare Diseases,
National Institute of Health
http://rarediseases.info.nih.gov/
Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.
The Trust for America's Health
http://healthyamericans.org
Trust for America's Health is a national non-profit organization whose mission is to protect the health and safety of all communities, especially those most at risk of environmental and other public health threats. Their goal is to strengthen the nation's public health system through science-based research, community partnerships, education, and advocacy.
National Newborn Screening and
Genetics Resource Center
http://genes-r-us.uthscsa.edu/
The National Newborn Screening and Genetics Resource Center (NNSGRC) is a cooperative agreement between the Maternal and Child Health Bureau (MCHB), Genetic Services Branch and the University of Texas Health Science Center at San Antonio (UTHSCSA), Department of Pediatrics.
Newborn Screening Fact
Sheets, AAP
http://www.aap.org/policy/01565.html
These newborn screening fact sheets were developed by the Committee on Genetics of the American Academy of Pediatrics (AAP) (1996)
Newborn Screening
Publicaions, Texas Department of Health
https://www.tdh.state.tx.us/newborn/pubs.htm
Includes multiple parent information pamplets that are written in English and Spanish (En Español) .
Newborn Screening Tests
Fact Sheet, MOD
Answers to some common questions parents ask about newborn screening tests; developed by the March of Dimes.
Newborn
Screening Tests--Neonatology on the Web
http://www.neonatology.org/syllabus/newborn.screen.html
Overview of the history of newborn screening and a list of which tests are performed in which states of the US. Includes disease descriptions.
Newborn Screening for
Congenital Hypothyroidism: Recommended Guidelines, AAP
http://aappolicy.aappublications.org/cgi/content/abstract/pediatrics;91/6/1203
American Academy of Pediatrics:
Policy Statements
http://www.aap.org/policy/pprgtoc.cfm
List of all AAP policy statements, including search engine. Selected genetic-related statements:
Genetic Alliance
http://www.geneticalliance.org/
March of Dimes
http://www.modimes.org
Information on what causes birth defects, common types, how they can be prevented, diagnosed and treated. Also information on national legislation to fund research and links to public and private organizations.
Medem
http://www.medem.com/
Healthcare information from professional medical societies, for physicians and patients
Med Help International
http://www.medhlp.org
A nonprofit organization a nonprofit organization, is dedicated to helping all who are in need find qualified medical information and support for their medical conditions and questions.
Mid-Atlantic Regional Human Genetics
Network (MARHGN)
www.pitt.edu/~marhgn
The Mid-Atlantic Regional Human Genetics Network is a partnership of consumers, health care providers and other professionals, government agencies, and commercial enterprises.
National Organization of Rare Diseases
(NORD)
www.rarediseases.org
Describes efforts underway to prevent, treat, and cure rare "orphan" diseases. A good resource for information on rare diseases with many good links to disease-specific organizations and support groups.
New York Online Access to Health
(NOAH)
http://www.noah-health.org/
NOAH seeks to provide high quality full-text health information for consumers that is accurate, timely, relevant and unbiased. NOAH currently supports English and Spanish.
OMIM(TM) 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. The database contains textual information, pictures, and reference information. It also contains copious links to NCBI's Entrez database of MEDLINE articles and sequence information.
Governor
Tim Kaine
http://www.governor.virginia.gov/
Official site of the Governor of Virginia.
Virginia
http://www.state.va.us/
Official site of the Commonwealth of Virginia.
Virginia General
Assembly
http://legis.state.va.us/
Official site of the Virginia General Assembly.
Virginia
Government
http://www.vipnet.org/portal/government/index.htm
Links to organizations found at this site are provided solely as a service to our users. These links do not constitute an endorsement of these organizations or their programs by the Virginia Department of Health, and none should be inferred. The Virginia Department of Health is not responsible for the content of the individual organization web pages found at these links.
Contact us at sharonk.williams@vdh.virginia.gov
Sharon Williams, R.N., M.S.
Virginia Genetics Program Manager
Virginia Department of Health
Division of Child and Adolescent Health
109 Governor Street, 8th Floor, Richmond, Virginia 23219
Phone: (804) 864-7712 FAX: (804) 864-7807
