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Rare Disorders

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Can't find the rare or genetic disorder you are looking for in our section on specific diseases? These sites provide information or linkages relating to a wide variety of rare and genetic disorders.
 
Note: Parents of children with rare disorders who are looking for other parents of children with the same conditions may also want to check our page of matching services.
 
[bullet] The Genetic Alliance
Formerly 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.
 
[bullet] Birth Defect Research for Children
Formerly 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.
 
[bullet] Directory of Genetic Services A Resource for Health Professionals (Mountain States Regional Genetics Services Network)
This directory lists resources for the diagnosis and management of genetic disorders in Arizona, Colorado, Montana, New Mexico, Utah and Wyoming.

[bullet] GeneClinics
Developed 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.
 
[bullet] Genetic Syndrome Support Groups Online and other Health-related WWW Sites
This personal home page features an extensive directory of web sites, alphabetically arranged by disease or condition.
 
[bullet] Genetics Education Center
Based at 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.
 
[bullet] National Institutes of Health Office of Rare Disorders
This government 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 support groups.
 
[bullet] National Organization for Rare Disorders (NORD)[starred entry]
NORD is 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.
 
[bullet] Online Mendelian Inheritance in Man (OMIM)
This site 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.
 
[bullet] Rare Genetic Diseases in Children
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.
 
[bullet] Other Sites
We have 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.
[bullet] Family Village Library
[bullet] Health Diseases and Conditions (Yahoo)
[bullet] Healthfinder
[bullet] PubMed
 
Related Subjects
[bullet] Health and Medical - General
[bullet] Matching Services
[bullet] Specific Disorders
[bullet] Resources in your state
 
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