Locate healthcare providers and researchers who have knowledge of your condition.
Navigate the process of trying to obtain a diagnosis.
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:
- Extensive information on many of the rare diseases.
- Information on how to contact the Genetic and Rare Diseases Information Center (GARD) and other rare diseases information sources.
- Planned, ongoing, or completed clinical studies and trials in the Rare Diseases Clinical Research Network (RDCRN).
- Rare disease research funding opportunities from NIH and other sources.
- Patient recruitment and referral procedures for the RDCRN and the NIH Clinical Center hospital.
- Rare diseases publications and reports from ORDR/NCATS.
- Sources for genetic testing and counseling.
- Information on transportation and lodging for patients and their families during diagnosis and treatment at NIH and at other research sites across the Nation.
- Information about ORDR/NCATS- supported scientific conferences.
- Opportunities for transfer of technology for the prevention, diagnosis, or treatment of rare diseases.
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.
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 http://get.adobe.com/reader/.
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 firstname.lastname@example.org.
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 email@example.com.
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.
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