June 2002 MedBytes: Genetic Diseases

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TMA's Council on Scientific Affairs has approved several Web sites as sources of information for physicians and their patients regarding genetic diseases. These sites are listed for educational purposes only and are not to take the place of medical advice for diagnosis or treatment of a genetic disorder. TMA does not support or endorse any specific organization listed here.

GeneTests·GeneClinics
Located at www.geneclinics.org , this Web site includes an international directory of gene-testing laboratories and genetic and prenatal diagnosis clinics. It also offers the online publication "GeneReviews." A one-time free registration is required. The site is funded by the National Institute of Health, the Health Resources and Services Administration, and the U.S. Department of Energy.

March of Dimes
The "Health Library" on the March of Dimes site at www.modimes.org has information on birth defects and support groups.

National Organization for Rare Diseases
This site at www.rarediseases.org includes information on rare diseases via its "Rare Diseases Database" and links to foundations, agencies, and support groups through its "Organizational Database."

Mountain States Genetics Network
Located at www.mostgene.org, this site offers a comprehensive "Directory of Online Genetic Support Groups."

American Medical Association
The "Genetics and Molecular Medicine" page on the AMA Web site at www.ama-assn.org/ama/pub/category/1799.html provides information on current legislative issues and recent public policy regarding genetics.

GeneLetter
GeneLetter at www.geneletter.org is a free online magazine about genetic medicine published by GeneSage, a genetic services company founded by Paul Billings, MD, PhD, and Philip Reilly, MD, JD. Monthly updates on the latest developments in genetic medicine, "eAlerts," are free but require a one-time registration.

Genetic Alliance
The Genetic Alliance site at www.geneticalliance.org includes a "Genetic Issues" page with information regarding ethical, legal, and social implications of genetic testing and genetic discrimination and legislative links. The Genetic Alliance is an international coalition representing more than 300 consumer and health professional organizations.

Oak Ridge National Laboratory
The Oak Ridge National Laboratory Web site at www.ornl.gov/hgmis offers a primer on the Human Genome Project as well as information on genetics research.

U.S. Department of Energy (DOE)
DOE's Office of Science site, http://science.energy.gov/, offers in-depth information on the history and current progress of the Human Genome Project.

On the TMA Web site
Want to use the Web to find reliable medical information? On the TMA Web site, you can access MD Consult's and Ebsco Publishing's clinical and health business databases. Up-to-date full-text clinical and health business journal articles, textbooks, and other resources are available. Members who use the online resources will be able to perform their own literature searches at any time of day and in many cases will be able to print full-text excerpts from textbooks and journals. The TMA Library is offering free access to the resources as a members-only benefit. Throughout 2002, TMA members can try out MD Consult and Ebsco for free. The pilot study is part of the development of "TMA Library of the Future." It will be continued, expanded, or refined based on member usage and satisfaction.

MedBytes is a quick look at new, or newly discovered, Web sites of interest to Texas physicians. The column also highlights features of the TMA Web site at www.texmed.org. If you know of some cool medical sites or have questions about how to use the TMA Web site, email Erin Prather. Publication of information about Web sites in this column is not to be considered an endorsement or approval by the Texas Medical Association of the sites or sponsors, or of any products or services involved.

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