MANAGEMENT AND RESEARCH SUPPORT FOR THE GENETIC AND RARE DISEASES (GARD) INFORMATION CENTER AND RELATED PROGRAMS

NIH RePORTER · NIH · N02 · $522,283 · view on reporter.nih.gov ↗

Abstract

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), now a part of the National Center for Advancing Translational Sciences (NCATS) - two agencies at the National Institutes of Health (NIH) - to help people find useful information about genetic and rare diseases. GARD provides immediate, virtually round-the-clock 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 over 15,500 inquiries on 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.

Key facts

NIH application ID
11221078
Project number
75N95024F00124-0-0-1
Recipient
ICF, INC., LLC
Principal Investigator
KATE SAULS
Activity code
N02
Funding institute
NIH
Fiscal year
2024
Award amount
$522,283
Award type
Project period
2024-07-29 → 2024-09-28