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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.
-
- 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.
-
- 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.
-
- 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.
-
- 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.
-
- 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.
-
- Genetic Syndrome
Support Groups Online and other Health-related WWW Sites
- An
extensive directory of web sites, alphabetically arranged by
disease or condition.
-
- 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.
-
- Health
Diseases and Conditions (Yahoo)
- Yahoo's
extensive list of links to web sites about different diseases
and conditions.
-
- 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.
-
- National Organization for
Rare Disorders (NORD)
- 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.
-
- 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.
-
- 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.
-
- 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.
-
- 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.
-
- Related
subjects:
- Health and Medical - General
- Matching Services
- specific disorders
-
-
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