Related Links

Genetic Diseases

Federal Resources

Centers for Disease Control (CDC):
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.

Genetics Home Reference is the U. S. National Library of Medicine web site for consumer information about genetic conditions and the genes or chromosomes responsible for those conditions.

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.

Maternal and Child Health Bureau/HRSA

Cultural Competence Resources for Health Care Providers:
Highlights approximately 40 Health and Resources and Services Administration (HRSA) supported projects on the critical subject of serving ethnoculturally and socially diverse groups.

The 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, organization, 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.

National Human Genome Research Institute:
Established in 1989, The National Center for Human Genome Research's (NCHGR) mission is to head the Human Genome Project for the National Institutes of Health (NIH).

National Institutes of Health:
The collective research components of the NIH make up the largest biomedical research facility in the world. NIH is part of the U.S. Department of Health and Human Services.

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.

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, 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.

U.S. Department of Energy

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.

Private Organizations

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.

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.

Association of State and Territorial Health Officials (ASTHO):
ASTHO is the national non-profit organization representing the state and territorial public health agencies of the United States, the U.S. Territories, and the District of Columbia.

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.

Family Voices:
Family Voices is a national, grassroots clearinghouse for information and education concerning the health care of children with special health needs.

GeneClinics:
GeneClinics is an expert-authored, peer-reviewed clinical genetic information resource consisting of concise descriptions of specific inherited disorders and authoritative, current information on the role of genetic testing in the diagnosis, management, and genetic counseling of patients with these inherited conditions.

GeneTests:
Funded by the National Library of Medicine of the NIH and Maternal & Child Health Bureau of HRSA, GeneTests is a genetic testing resource that includes: A Genetics Laboratory Directory, a Genetics Clinic Directory, an introduction to genetic counseling and testing concepts (About Genetic Services), and a PowerPoint slideshow presentation for genetics professionals (in Teaching Tools).

Genetic Alliance:
The Genetic Alliance is an international coalition of individuals, professionals and genetic support organizations that are working to promote healthy lives for everyone impacted by genetics.

March of Dimes:
The Resource Center of the March of Dimes 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.

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.

National Organization for Rare Disorders:
NORD is the only organization of its kind-a unique federation of more than 140 not-for-profit voluntary health organization serving people with rare "orphan" disorders and disabilities. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

New York Online Access to Health (NOAH):
NOAH: New York Online Access to Health seeks to provide high quality full-text health information for an underserved population of health consumers last is accurate, timely, relevant and unbiased. NOAH supports English and Spanish. Originally funded by the U.S. Department of Commerce's National Telecommunications and Information Administration (NTIA) and matching grants, NOAH currently has numerous sponsors including the March of Dimes.

University-Based Organizations

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.

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!

The Genetics Resource Center:
The Genetics Education and Counseling Program, a joint effort of the University of Pittsburgh and UPMC Health System, is dedicated to providing up-to-date information about inherited conditions and related services for individuals, families, and whole communities. For a detailed list of resources, add "/resource" to the end of address.

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.

Kansas University Medical Center:
Genetics Education Center - For educators interested in human genetics and the human genome project.

Kansas University Medical Center:
Information for genetics professionals - clinical, research, and educational resources for genetic counselors, clinical geneticists, and medical geneticists.

The National Center for Cultural Competence (NCCC):
The National Center for Cultural Competence (NCCC) is a component of the Georgetown University Child Development Center, Center for Child Health and Mental Health Policy, and is housed within the Department of Pediatrics of the Georgetown University Medical Center. The mission of the NCCC is to increase the capacity of health care programs to design, implement and evaluate culturally competent service delivery systems.

The Sickle Cell Information Center:
The mission of this site is to provide sickle cell patient and professional educators, 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.