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[The DRM Guide to Disability Resources on the Internet]

  The DRM WebWatcher

Rare Disorders

 Updated 9/12/98

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These sites provide information or linkages relating to a wide variety of rare and genetic disorders. 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] Alliance of Genetic Support Groups
The web site of this national coalition features an online directory of organizations concerned with specific genetic disorders and related resources.
 
[bullet] Association of Birth Defect Children (ABDC)
The Association 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] Chromosome Deletion Outreach (CDO)
An international support group for families with chromosome deletions, additions, inversions, translocations and rings, CDO provides family matching, a quarterly newsletter and updates on rare chromosome disorders. The web site features information about chromosome disorders and support groups, an "ask the doctor" column, personal profiles, and more.
 
[bullet] Directory of Genetic Services A Resource for Health Professionals (Mountain States Regional Genetics Services Network )
A directory lists resources for the diagnosis and management of genetic disorders in Arizona, Colorado, Montana, New Mexico, Utah and Wyoming.
 
[bullet] Family Village Library
Though not geared specifically to rare disorders, there are hundreds of them included in the Family Village's Library of "specific disabilities." Each page features links to information, web sites, etc.
 
[bullet] Genetic Syndrome Support Groups Online and other Health-related WWW Sites
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] Health Diseases and Conditions (Yahoo)
Yahoo's extensive list of links to web sites about different diseases and conditions.
 
[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, an authoritative catalog of human genes and genetic disorders, which contains technical textual information, pictures, and reference information; the OMIM gene map; the OMIM morbid map; and related technical resources.
 
[bullet] Pediatric Database (PEDBASE)
This database contains basic medical information about 550 "childhood illnesses," including many rare disorders. The entries may be viewed online, and the entire database can be downloaded.
 
[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; and a cool section for kids by the author's daughter; and more.
 
[bullet] Unknown Disorders
"Devoted to those people and their families who suffer from unknown and rare disorders," this web site contains "case files" of people seeking information or suggestions regarding their disorders, links, and related information.
 
[bullet] Related subjects:
[bullet] Health and Medical - General
[bullet] Matching Services
[bullet] specific disorders
 
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