Webliography: Rare Diseases Resource Page
by Julie Quetel, University of Illinois at Urbana-Champaign
M.S. student at the Graduate School of Library and Information Science
The purpose of this Rare Disorders Resources page is to present an overview of rare disorders as a subject area and to create a selective bibliography of diverse resources that will aid patients and professionals. This Web site is intended to assist individuals, families, librarians, and health care professionals seeking information on behalf of patients.
The majority of Web sites provided are meta-sites that are clearinghouse resources of terminology, medical information, and links concerning many disorders rather than individual diseases. In many cases these Web sites point the end user to links that lead to Web sites devoted to specific diseases. Four of the annotated Web resources lead to information about clinical trials that are being conducted in the United States.
Information for this webliography was found by open Web searches, browsing Web resources retrieved, and following links on those Web sites.
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