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GARD Website FAQs

A rare disease is a disease or condition that impacts fewer than 200,000 people in the U.S. There are more than 10,000 known rare diseases that affect about 1 in 10 people (or 30 million people) in the U.S., according to the Orphan Drug Act.

Other countries may have their own official definitions of a rare disease. For example, the European Union defines a disease as rare when it affects fewer than 1 in 2,000 people.

GARD Website FAQs

A rare disease is a disease or condition that impacts fewer than 200,000 people in the U.S. There are more than 10,000 known rare diseases that affect about 1 in 10 people (or 30 million people) in the U.S., according to the Orphan Drug Act.

Other countries may have their own official definitions of a rare disease. For example, the European Union defines a disease as rare when it affects fewer than 1 in 2,000 people.

GARD utilizes selection criteria to decide which rare diseases are included on the website. Criteria are based on the availability of published and curated research information from rare disease research databases. Some rare diseases may not be represented by a webpage on GARD due to the limited availability of research information, or source information may not yet be available in GARD's database.

To provide information for as many diseases as quickly as possible, GARD's webpages are populated with information in bulk, rather than one disease page at a time. Though not all diseases are currently featured on GARD's website, our list of rare diseases can be downloaded here: GARD Rare Disease List_September2024.csv

If you are unable to find information on the disease you are looking for, contact one of our Information Specialists for help.

The information provided on this website reflects GARD's commitment to its role as a public health resource. Rare diseases found on GARD should not be used as policy statements of NCATS or the NIH and are not regulatory statements of the U.S. Food and Drug Administration (U.S. FDA). Learn more about rare diseases at U.S. FDA.

The information on the GARD website is collected and curated from many research databases. This data is commonly obtained from medical literature that reports on people with the disease and research involving the disease. However, there may be too few people with a specific rare disease that seek medical care or receive a diagnosis. In such cases, little information may be known about the disease, and sections on the GARD website may be missing or incomplete.

When there is limited information available, GARD can still help you. When people contact us with complex health concerns, we often first suggest they consider contacting doctors at a larger university or academic health center. These centers tend to have the latest technology and treatments. Healthcare providers at universities and academic health centers often work together with others to diagnose and treat patients; they may also have doctors who are involved in clinical trials.

It is common for a person affected with a rare disease or a complex health condition to search worldwide for available treatments and research. Advice on the treatment or care of a patient should be obtained through consultation with a physician who has examined that patient and is familiar with that patient's medical history. Though GARD cannot offer medical advice and is not directly involved in patient care or research, we aim to connect you with helpful resources. Please contact GARD for additional assistance.

GARD defines a patient organization as one that creates a community of support by connecting people living with the same rare disease, their families, and caregivers to others like them.

To be included on GARD's website, a patient organization must:

If an organization provides medical advice or would like its expert directory or research registry link published on GARD, there must be a medical advisor or medical advisory/review board. Please note: An organization without a medical advisor or medical review board may be added to GARD, but neither an expert directory link nor a patient research registry link will be included.

A patient organization may be excluded from GARD's website if:

Does your organization meet the criteria? Request to add it to GARD.

GARD's website is built with high-quality health information that is easy to understand.

GARD links to non-governmental websites if they meet a standard set of criteria. Staff use this list as a guide to determine if a resource will be included on GARD's website. GARD maintains a separate set of criteria for patient organizations.

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In addition to the criteria for websites listed above, videos should meet these guidelines:

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