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ORDR Web Site User Tips

Changing Text Size
The text-size tool, located in the upper right hand corner, changes the size of text on a page to 11, 13, or 15 points.

Searching Our Site
Our site uses a custom designed search engine to look for the text entered into the search box located in the upper right corner. If you are searching for information on a specific condition, you may want to first check its spelling by browsing the rare diseases terms by letter.

Getting Around Our Site
The ORDR Web site has 10 main sections with an additional section in Spanish. Diagonal looking buttons located near the top of all pages on the ORDR Web site are the links to each of the main sections.

Find Information About

Rare Diseases Information
Links to definitions, causes, treatments, and publications about rare diseases.

Patient Advocacy Groups
Information about national and international federations or umbrella organizations representing and furthering associated disease-specific patient advocacy groups with a focus on rare diseases support, diagnosis, treatment, and research.

Research & Clinical Trials
Links to Federal and non-federal resources providing information about research into rare diseases including ORDR-supported research.

Genetic & Rare Diseases Information Center
Established by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR), the Genetic and Rare Diseases Information Center employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals, and biomedical researchers.

Scientific Conferences
ORDR collaborates with Institutes, Centers, and Offices at NIH to stimulate rare diseases research by cosponsoring scientific conferences where research is lagging or to take advantage of scientific opportunities.

Genetics Information & Services
Provides a broad range of resources including genetics information, links to genetic testing and newborn screening, genetic counseling and a variety of policy and ethics resources.

Research Resources
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Patient Travel & Lodging
Links to charitable or special fare flights to research and treatment sites, a nationwide directory of hospital hospitality houses for patients and families, and fee-for-service ambulance services. Note: The organizations listed in this section are not Government agencies, and ORDR does not endorse or promote any of these organizations.

Reports & Publications
Lists a variety of rare diseases-related reports, special purpose publications, and archived materials.

Rare Diseases News
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Downloading Publications
Publications on our site are available printer-friendly HTML formats and some are also available as portable document format (PDF) files. A PDF file preserves the layout and presentation of a publication's printed version. PDF files can only be viewed with the Adobe Reader software; if you do not have the Adobe Reader, you may download a free copy from the Adobe Web site.

Contacting Us
The Contact Us link located at the bottom of every page takes you to a page with ORDR contact information, including the e-mail address. You can send inquiries or comments about our site to this address.

Finding Other Sites
Some of our pages link to the sites of other government agencies. In general, clicking on an external link opens the agency's page in a new browser window. Inclusion of a link to or address for a non-government Web site is not an endorsement or recommendation of its policies, products, or services.

Site Policies
Includes the Privacy and Security Notice, Disclaimer, and Accessibility Notice.

Browser Compatibility
We have tested our Web site with numerous Web browsers using various computer platforms. We did not encounter any problems displaying our Web site. If you experience difficulties displaying our site's pages, please send us a message.





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