About the Genetic and Rare Diseases Information Center (GARD)
The Genetic and Rare Diseases Information Center (GARD) was created in 2002 by
the National Human Genome Research Institute (NHGRI) and the Office of Rare
Diseases Research (ORDR) - two agencies at the National Institutes of Health
(NIH) - to help people find useful information about genetic and rare diseases.
GARD provides timely access to experienced information specialists who can
furnish current and accurate information - in both English and Spanish - about
genetic and rare diseases.
So far, GARD has responded to
38,062
inquiries on about
8,473
rare and genetic diseases. Requests come not only from patients and their
families, but also from physicians, nurses and other health-care professionals.
GARD also has proved useful to genetic counselors, occupational and physical
therapists, social workers, and teachers who work with people with a genetic or
rare disease. Even scientists who are studying a genetic or rare disease and
who need information for their research have contacted GARD, as have people who
are taking part in a clinical study.
Community leaders looking to help people find resources for those with genetic
or rare diseases and advocacy groups who want up-to-date disease information
for their members have contacted GARD. And members of the media who are writing
stories about genetic or rare diseases have found the information GARD has on
hand useful, accurate and complete.
GARD has information on:
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What is known about a genetic or rare disease.
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What research studies are being conducted.
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What genetic testing and genetic services are available.
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Which advocacy groups to contact for a specific genetic or rare disease.
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What has been written recently about a genetic or rare disease in medical
journals.
GARD information specialists get their information from:
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NIH resources.
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Medical textbooks.
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Journal articles.
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Web sites.
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Advocacy groups, and their literature and services.
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Medical databases.
GARD Article and Sidebar for Health-Care Professionals’
Newsletters
A feature article and
information sidebar has been designed for use in newsletters by health-care
professionals which describes the free services that GARD offers and lists GARD
contact information. Newsletter editors are free to edit the article to meet
their publication's particular needs.
Printed Resource Materials
GARD Information Center Flyer
A downloadable flyer for the Genetic and Rare Diseases Information Center in
both English and Spanish.
GARD Information Center Brochure
Provides basic information about genetic and rare diseases and a brief
description of the services that GARD offers. The brochure covers such topics
as:
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A brief overview on genes and genetic diseases.
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Background information on the Office of Rare Diseases and NHGRI.
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Full contact information for GARD.
The "About GARD" Card
A handy card that provides contact information for GARD's team of experienced
information specialists.
Versions
English(
751KB)
en
español(
784KB)
For Professional Copies of the "About GARD" Card and the Gard Information
Center Brochure, contact:
Linda Turner
E-mail: turnerl@mail.nih.gov
Phone: (301) 402-0837