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Genetic Web Links

National Society of Genetic Counselors
http://www.nsgc.org/

Breast Cancer Information
http://ghr.nlm.nih.gov/condition/breast-cancer

Genetic Alliance
The Genetic Alliance (formerly The Alliance of Genetic Support Groups, Inc.), is an international coalition of individuals, professionals and genetic support organizations that is working together to enhance the lives of everyone impacted by genetic conditions. 
http://www.geneticalliance.org/

National Institutes of Health
http://www.nih.gov/

National Human Genome Research Institute
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). NHGRI is one of 24 institutes, centers, or divisions that make up the NIH, the federal government's primary agency for the support of biomedical research. 
http://www.genome.gov/

Genome Statute and Legislation Database
The National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH), unveiled a new Web-based resource on July 19,2004 that will enable researchers, health professionals and the general public to more easily locate information on laws and policies related to a wide array of genetic issues.
http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm

Office of Rare Diseases
The Office of Rare Diseases (ORD), National Institutes of Health (NIH) provides information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.
http://rarediseases.info.nih.gov/

National Cancer Institute
CancerNet is the gateway to the most recent and accurate cancer information from the National Cancer Institute, a component of the National Institutes of Health.
http://www.cancer.gov/

The National Heart, Lung, and Blood Institute (NHLBI)
The National Heart, Lung, and Blood Institute (NHLBI), National Institutes of Health (NIH) provides leadership for a national program in diseases of the heart, blood vessels, lungs, and blood; sleep disorders; and blood resources.
http://www.nhlbi.nih.gov/

Online Mendelian Inheritance in Man
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, th~ 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.
http://www.ncbi.nlm.nih.gov/omim

Secretary's Advisory Committee on Genetic Testing (SACGT)
Secretary of Health and Human Services Donna Shalala chartered the Secretary's Advisory Committee on Genetic Testing (SACGT) in June 1998 in response to recommendations of two working groups commissioned jointly by the National Institutes of Health (NIH) and the Department of Energy (DOE) for the Human Genome Project.
http://oba.od.nih.gov/SACGHS/sacgt_info.html

MCHBJHRSA Grantees GeneTests
Funded by the National Library of Medicine of the NIH and Maternal & Child Health Bureau of HRSA, GeneTestsTh is a genetic testing resource that includes: A Genetics Laboratory Directory, a Genetics Clinic Directory, an introduction to genetic counseling and testing concepts (in About Genetic Services), and a Powerpoint slideshow  presentation for genetics professionals (in Teaching Tools).
http://www.ncbi.nlm.nih.gov/sites/GeneTests/

GeneClinics
A clinical information resource relating genetic testing to the diagnosis, management, and genetic counseling of individuals and families with specific inherited disorders.
http://www.ncbi.nlm.nih.gov/sites/GeneTests/

National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NOR]) is committed to the identification, treatment, and, cure of rare disorders through programs of education, advocacy, research, and service.
http://www.rarediseases.org/

Kansas University Medical Center
Information for genetic professionals at the University of Kansas Medical Center is updated regularly with clinical, research, and educational resources for genetic counselors, clinical geneticists, and medical geneticists. This is a useful resource for teachers, as well.
http://www.kumc.edu/gec/geneinfo.html

Family Village
The Family Village is a global community that integrates information, resources, and communication opportunities on the Internet for persons with cognitive and other disabilities, for their families, and for those that provide them services and support. The community includes informational resources on specific diagnoses, communication connections, adaptive products and technology, adaptive recreational activities, education, worship, health issues, disability-related media and literature, and much, much more!
http://www.familyvillage.wisc.edu/index.html

National Coalition for Health Professional Education in Genetics
Started in 1996 by the American Medical Association, the American Nurses Association, and the National Human Genome Research Institute, the National Coalition for Health Professional Education in Genetics (NCHPEG) is a national effort to promote health professional education and access to information about advances in human genetics. NCHPEG members are an interdisciplinary group of leaders from over 100 diverse health professional organizations, consumer and voluntary groups, government agencies, private industry, managed care organizations, and genetics professional societies. By facilitating frequent and open communication between stakeholder groups, NCHPEG seeks to capitalize on the collective expertise and experience of members and to reduce duplication of effort.
http://www.nchpeg.org/

The Council for Responsible Genetics
The Council for Responsible Genetics (CRG), founded in 1983, is a national nonprofit organization of scientists, environmentalists, public health advocates, physicians, lawyers and other concerned citizens. CRG encourages informed public debate about the social, ethical, and environmental implications of new genetic technologies, and advocates for socially responsible use of these technologies. CRG monitors the development of new genetic technologies in two broad program areas: human genetics, and commercial biotechnology and the environment.
http://www.councilforresponsiblegenetics.org/

Centers for Disease Control and Prevention
http://www.cdc.gov/

Office of Genetics and Disease Prevention, Centers for Disease Control and Prevention
The site provides current information on the impact of human genetic research and gene discoveries on disease prevention and health promotion. The site includes a weekly update of news stories, scientific literature, announcements, events, and public health perspectives on advances in human genetics.
http://www.cdc.gov/genomics/

The Human Genome Epidemiology Network (HuGE Net)
A global collaboration of individuals and organizations committed to the development and dissemination of population-based epidemiologic information on the human genome. The site features information on: population-specific prevalence data on human gene variants, epidemiologic data on the association between genetic variation and diseases in different populations; quantitative population-based data on gene-environment interaction; and population impact on the use of genetic tests and services in improving health and preventing disease.
http://www.cdc.gov/genomics/hugenet/

National Immunization Program
The National Immunization Program (NIP) is a part of the Centers for Disease Control and Prevention, located in Atlanta, Georgia. This site provides recent and accurate immunization information from the NIP, the Federal Government's principal agency for immunization policy and recommendations. You will find a wide range of immunization information including information about vaccine preventable diseases, the benefits of immunization, and the risks of immunization vs. the risk of disease. In addition, you will find a wide range of educational materials and resources.
http://www.cdc.gov/vaccines/

National Immunization Program Immunization Registry Clearinghouse - Activities and Updates
The National Immunization Program (NIP) of the Centers for Disease Control (CDC), is committed to promoting the development and maintenance of state- and community-based computerized registries which capture immunization information on all children. To aid in the development of these systems, NIP has developed an Immunization Registry Clearinghouse.
http://www.cdc.gov/vaccines/programs/iis/index.html

March of Dimes - Resource Center
The Resource Center provides accurate, timely information and referral services to the public. The staff of the Resource Center includes trained professionals who help people, one on one, to address personal and complex problems. They answer questions from parents, health care providers, students, librarians, government agencies, health departments, social workers--people from all walks of life and from around the world.
http://www.marchofdimes.com/

U.S. Department of Energy
http://www.energy.gov/

HuGEM II Project
The purpose of the HuGEM II Project is to provide educational training and resources to increase the knowledge of and sensitivity to human genetics, the Human Genome Project, and the ethical, legal, and psychosocial issues of genetic testing and research for members of seven collaborating professional organizations.
http://www.ornl.gov/sci/techresources/Human_Genome/education/education.shtml

Human Genome Project Information
Learn the basics about the Human Genome Project: what it is; its progress, history, and goals; frequently asked questions; and other information for people new to the project. Funded by the U.S. Department of Energy.
http://genomics.energy.gov/

American College of Medical Genetics
The American College of Medical Genetics (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.
http://www.acmg.net/AM/Template.cfm?Section=Home3

American Society of Human Genetics
The American Society of Human Genetics (ASHG) was established in 1948 to provide leadership in research, education and service in human genetics. Accordingly it elected to publish The American Journal of Human Genetics and sponsor an annual research meeting. The human genetics community grew and spawned a new field of endeavor, genetic counseling, to support delivery of clinical genetics services. Over 5,000 members include researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses and others involved in human genetics.
http://www.ashg.org/

Communities of Color and Genetics Policy Project
Michigan State University Center for Ethics and Humanities in the Life Sciences and Tuskegee University National Center for Bioethics in Research and Health Care have combined projects to form a five year project designed to provide policy recommendations based on public perceptions and responses to the explosion of genetic information and technology. The project also tests the process of community dialogue as an effective means to engage citizens in thoughtful and productive discussions about policy needs regarding genetic information and technology and other value-laden issues.
http://www.sph.umich.edu/genpolicy/

The Sickle Cell Information Center
The mission of this site is to provide sickle cell patient and professional education, news, research updates and worldwide sickle cell resources. It is the mission of our organizations to provide world class compassionate care, education, counseling, and research for patients with sickle cell disease. It is our mission to help break the sickle cycle.

This Sickle Cell Information Web Site is sponsored by the following partners: The Georgia Comprehensive Sickle Cell Center at Grady Health System, Atlanta, Georgia; Emory University School of Medicine, Department of Pediatrics, and Department of Medicine, Division of Hematology - Oncology; The Sickle Cell Foundation of Georgia Inc.; Morehouse School of Medicine.
http://scinfo.org/

Family Voices
Families and friends speaking on behalf of children with special health care needs.
http://www.familyvoices.org/

National Newborn Screening and Genetic Resource Center (NNSGRC)
A cooperative agreement between the Maternal and Child Health Bureau, Genetic Services Branch, HRSA and the University of Texas Health Science Center at San Antonio, Department of Pediatrics. The mission of the NNSGRC is to provide a forum for interaction between consumers, health care professionals, researchers, organizations, and policy makers in refining and developing public health newborn screening and genetics programs and to serve as a national resource center for information and education in the areas of newborn screening and genetics.
http://genes-r-us.uthscsa.edu/

Heartland Regional Genetics and Newborn Screening Collaborative
The Heartland Regional Genetics and NBS Collaborative works to improve access to expanded newborn screening, professional and public genetics literacy, equitable access to genetics evaluation, counseling and testing services, and cooperation between neighboring states within the region. The Collaborative facilitates and promotes collaboration, assessment, planning, program development and evaluation, education, research and public policy activities related to these issues. The collaborative is a network of genetics and newborn screening providers, advocates and other stakeholders from the states of AR, IA, KS, MO, NE, ND, OK, and SD.
http://www.heartlandcollaborative.org/

National Coordinating Center (NCC) for the Genetics and Newborn Screening Regional Collaborative (RC) Groups
This center provides resource and technical assistance to the seven (7) genetic regional collaboratives. The focus of the Center is to strengthen the genetics and newborn screening (NBS) capacity of the States and the Nation, and address maldistribution of genetic services and providers.
http://www.nccrcg.org/AM/Template.cfm?Section=Home5

Contact Information

Oklahoma State Department of Health
1000 NE 10th St
Oklahoma City, OK 73117-1207

(800) 766-2223 toll free
(405) 271-6617 phone
(405) 271-4892 fax

 

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