The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (NCATS) and funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy to understand information about rare or genetic diseases in English or Spanish.
Who can GARD help with information?
- People who have rare or genetic diseases.
- Parents, family members, and friends of someone with a rare or genetic disease.
- Doctors, nurses, genetic counselors, other health care providers, social workers, and teachers who work with people with rare or genetic diseases.
- Scientists who are studying rare or genetic diseases and need information for their research or for people taking part in studies.
- Community leaders who are helping people find resources about rare or genetic diseases.
- Advocacy groups who want up-to-date disease information for their Web sites.
- Members of the general public who want to learn more about a rare or genetic disease.
Where should I start my search for information on a rare or genetic disease?
Visit the Diseases section of our site to search for a disease. Each disease has its own Web page, where Information Specialists post the answers to questions GARD has received.
Check the GARD Web pages for the following and more:
- Questions answered by GARD Information Specialists.
- Links to resources where you can find more information.
- Information about genetic testing and genetic services.
- Scientific conferences that have been sponsored by NIH.
- Organizations that provide information and support.
- Information about research studies and clinical trials.
- FDA-approved medications for rare diseases.
Where does GARD get information?
Information Specialists search the following and more:
- NIH resources.
- Medical textbooks.
- Journal articles.
- Web sites.
- Advocacy groups’ literature and services.
- Medical databases.
What if I can’t find the information I’m looking for?
Reliable information about rare or genetic diseases is often hard to find. If you can’t find the information you need on our Web site, please call or write to GARD, and our Information Specialists will answer your questions.
How do I contact GARD?
Information Specialists are available by phone Monday through Friday, 12:00 p.m. to 6:00 p.m. Eastern time (excluding federal holidays).
PO Box 8126
Gaithersburg, MD 20898-8126
International number: 1-301-251-4925
E-mail form: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Web site: http://rarediseases.info.nih.gov/GARD/
Who is the NCATS staff contact for GARD?
Henrietta Hyatt-Knorr is the task leader for the Genetic and Rare Diseases Information Center (GARD).
Henrietta Hyatt-Knorr, M.A.
Senior Program and Policy Analyst
Office of Rare Diseases Research
National Center for Advancing Translational Sciences
National Institutes of Health
Staff profile: http://ncats.nih.gov/staff/knorrh
GARD Video Tutorials
GARD Information Specialists developed the following video tutorials to answer frequently asked questions sent in to the GARD Information Center. These videos provide tips and resources to help you find information for your rare or genetic disease.
How to Find a Disease Specialist
Finding Treatment Information
How to Get Involved in Research
Tips for the Undiagnosed Resources for Researchers
Sobre GARD (español)
GARD Article for Health-Care Professionals’ Newsletters
A feature article has been designed for use in newsletters by health-care professionals that 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 Brochure
Provides a brief description of the services that GARD offers and includes the full contact information for GARD.
GARD Information Center Flyer
A one page flyer that includes the full contact information for GARD.
For printed copies of these materials, call 888-205-2311 or send a request using our email form. Please include the number of copies needed in your request.