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 38,020 inquiries on about 8,471 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:

• What is known about a genetic or rare disease.
• What research studies are being conducted.
• What genetic testing and genetic services are available.
• Which advocacy groups to contact for a specific genetic or rare disease.
• What has been written recently about a genetic or rare disease in medical journals.

GARD information specialists get their information from:

• NIH resources.
• Medical textbooks.
• Journal articles.
• Web sites.
• Advocacy groups, and their literature and services.
• 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