Share Print

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 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.

GARD has information on:

• What is known about a genetic or rare disease.
  
  
• What research studies are begin 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.
  
  

How to Contact a Genetic and Rare Diseases Information Specialist

Top of page

Last Reviewed: April 11, 2012