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Help Page

The ORDR Web site aims to answer questions about rare diseases and the activities of the ORDR/NCATS for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, and scientific conferences, as well as other disease-specific information about and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.

The ORDR Web site links to:

Searching Our Site
Our site uses a custom designed search engine located in the upper right corner of the site. If you are searching for information on a disease, you may want to first check its spelling by browsing our list of diseases by letter.

Downloading Publications
Some publications on our site are 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 Adobe Reader software; if you do not have the Adobe Reader, you may download a free copy from

Contact Us
The Contact Us link located at the bottom of every page. If you have questions about a rare disease, you can contact the GARD Information Center. If you have questions about the Office of Rare Diseases Research, you can call 301) 402-4336 or send an email to

Comments and Suggestions
We welcome your comments and suggestions on how we can make this Web site a better resource for you. Please send your comments to

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.

Locate healthcare providers and researchers who have knowledge of your condition.

Navigate the process of trying to obtain a diagnosis.