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Privacy Policy

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ORDR is committed to protecting the privacy of our Web site visitors. This page outlines our privacy and security policy as they apply to our Web site. Please contact us if you have any questions about our policies.

Your Visit to the ORDR Web site
Your visit to the ORDR Web site is private and secure. When you visit the ORDR Web site, we do not collect any personally identifiable information (PII) about you, unless you choose to explicitly provide it to us. We do, however, collect some data about your visit to our Web site to help us better understand public use of the site and to make it more useful to visitors. This page describes the information that is automatically collected and stored.

How ORDR Collects Information
When you browse through any Web site, certain information about your visit can be collected. ORDR uses the Google Urchin program to collect information automatically and continuously. The following information is automatically collected and stored about your visit:

  • The name of the domain or IP address you use to access the Internet (for example,, if you are using an America Online account).
  • The date and time of your visit.
  • The pages you visited.
  • The address of the Web site you came from when you arrived at our site.
  • The keywords you may enter into our search engine.

We use this information for statistical purposes and to help make our site more useful to visitors. However, no personally identifiable information (PII) is collected.

The ORDR and GARD staff conducts analyses and reports on the aggregated data from Google Urchin. The reports are only available to ORDR and GARD managers and other designated staff who require this information to perform their duties.

How ORDR Uses Cookies
The Office of Management and Budget (OMB) Memo M-10-22, Guidance of Online Use of Web Measurement and Customization Technologies allows Federal agencies to use session and persistent cookies.

When you visit any Web site, its server may generate a piece of text known as a “cookie” to place on your computer. The cookie allows the server to “remember” specific information about your visit while you are connected. The cookie makes it easier for you to use the dynamic features of Web pages. Requests to send cookies from ORDR’s Web pages are designed to collect information about your browser session only; they do not collect personal information about you.

There are two types of cookies, single session (temporary) and multi-session (persistent). Session cookies last only as long as your Web browser is open. Once you close your browser, the cookie disappears. Persistent cookies are stored on your computer for longer periods.

How are Temporary “Session” Cookies Used?
We use session cookies for technical purposes such as improving navigation through our site. These cookies let our server know that you are continuing a visit to our site. The “session” cookie is not permanently stored on your computer. The cookie and the information about your visit are automatically destroyed shortly after you close your browser to end the session.

How are “Persistent Cookies” Used?
We use persistent cookies to help us recognize new and returning visitors to the ORDR Web site. Persistent cookies remain on your computer between visits to the ORDR Web site until they expire. We do not use this technology to identify you or any other individual site visitor.

We also use persistent cookies to enable ORDR’s Google Urchin Web Analytics program to measure how new and returning visitors use the ORDR Web site over time.

How to Opt Out or Disable Cookies
If you do not wish to have session or persistent cookies placed on your computer, you can disable them using your Web browser. If you opt out of cookies, you will still have access to all information and resources the ORDR Web site provides.

Instructions for disabling or opting out of cookies in the most popular browsers are located at Please note that by following the instructions to opt out of cookies, you will disable cookies from all sources, not just those from ORDR’s Web site.

How is Personal Information Protected?
When inquiries are e-mailed to us, we store the question and the e-mail address so that we can respond or refer the question to the Genetic and Rare Diseases Information Center (GARD). If the ORDR staff person or GARD information specialist who answers the e-mail does not know the answer to your question, your query may be forwarded to another employee of the NIH who is more knowledgeable in that area. In response to questions on rare cancers, we refer to the National Cancer Institute’s Cancer Information Service (CIS) toll free at (800) 4-CANCER. E-mails or inquiries submitted via GARD’s online form may be seen by a number of GARD information specialists who are responsible for responding to e-mails. We store the question and the e-mail address so that we can respond electronically. Once an information specialist responds to the inquiry, the e-mail and all personally identifiable information is purged.

When you call the Genetic and Rare Diseases Information Center’s toll free or international phone numbers, your call is routed to a GARD Information Specialist through a third party vendor called LivePerson. GARD and ORDR staff do not have access to your phone number unless you provide it to us over the phone to respond to your question. Similarly, if you leave a voice mail message, we maintain the voicemail recording only as long as needed to respond to your question. ORDR and GARD staff do not collect or save any personally identifiable information from LivePerson or any third party vendor-managed functions.

On occasion, ORDR may conduct a study concerning the types of questions sent to us. These studies may involve coding the queries that have been purged of all personally identifiable information to see if there are recurring problems that users have in finding information. The knowledge gained by these studies is used to improve our Web site to make it more responsive to the needs of its users.

ORDR does not disclose, give, sell, or transfer any personal information about our visitors, unless required for law enforcement or by statute.

Site Security
This site is supported by the U.S. Government. It is protected by various provisions of Title 18, U.S. Code. Violations of Title 18 are subject to criminal prosecution in federal court.

For site security purposes and to ensure that this service remains available to all users, we use software programs to monitor traffic to identify unauthorized attempts to upload or change information, or otherwise cause damage. In the event of authorized law enforcement investigations, and pursuant to any required legal process, information from these sources may be used to help identify an individual.

Questions about NIH privacy policies should be sent to the NIH Office of the Senior Official for Privacy.

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