Because of a lapse in government funding, the information on this website may not be up to date, transactions submitted via the website may not be processed, and the agency may not be able to respond to inquiries until appropriations are enacted.
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Updates regarding government operating status and resumption of normal operations can be found at
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 websites.
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 webpage, where Information Specialists post the answers to questions GARD has received.
Check the GARD webpages 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:
Advocacy groups’ literature and services.
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 website, 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).