the Alliance of Genetic Support Groups, the Alliance "an
international coalition of individuals, professionals and genetic
support organizations that is working together to enhance the
lives of everyone impacted by genetic conditions." Its web
site includes a database of organizations that can be searched
by genetic condition, organization name, and even services offered.
the Association of Birth Defect Children (ABDC) - my, we have
a lot of name changes this year! - the Asociation provides parents
and professionals with information about birth defects and services
for children with disabilities, sponsors the National Birth Defect
Registry and parent matching service, and studies links between
drugs, radiation, alcohol, chemicals, lead, mercury, dioxin and
birth defects. The site features fact sheets, a newsletter, links,
and information about the organization.
at the University of Washington, Seattle and funded by the National
Institutes of Health, "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." This is an excellent starting point for disease-specific
information; the links to Medline resources are particularly
useful for the serious researcher. Added 7/15/2000.
the University of Kansas Medical Center, this web site "for
educators interested in human genetics and the human genome project"
features a wealth of well organized links to information about
the project, education resources, networking opportunities, information
about genetic conditions. The Genetic
Conditions/ Rare Conditions Support Groups & Information
Page, arranged alphabetically by condition, provides information
about national organizations, international organizations, categories
of conditions, consulting a genetic counselor /clinical geneticist,
kids sites or other sites.
web site provides information on more than 6000 rare diseases,
including current research, publications from scientific and
medical journals, completed research, ongoing studies, and patient
known for its extensive database of information about rare disorders.
You can search the database on this website to retrieve a synopsis
of the disorder (including synonyms, an abstract, and other resources);
the full text is available for a fee. The site also offers general
information about rare disorders, a kids' section, a used medical
equipment exchange, and related information.
includes a searchable version of the OMIM database, Johns Hopkins
University Medical School's authoritative catalog of human genes
and genetic disorders. The database includes technical textual
information, pictures, and reference data; the OMIM gene map;
the OMIM morbid map; and related technical resources.
Developed by a father in
search of information and operating under the aegis of the NYU Medical Center,
this extensive web site includes a comprehensive guide to web resources; internet
search tools; message boards; a layman's guide to genetic diseases; a cool
section for kids by the author's daughter; and more. While the site is a bit
difficult to navigate, it's packed with information and worth the effort.
selected the following sites from other sections of The
DRM Guide to Disability Resources on the Internet. Though
not specifically about rare or genetic disorders, they contain
extensive listings of information about specific disorders, including
many rare conditions.