Genetic disorders information resources

25 May 2007

In a collaborative effort, the US National Center for Biotechnology Information (NCBI) and the Genetic Alliance recently launched a new web-based portal to improve access to information on genetic disorders for health professionals, patients and carers. The portal is intended to serve the needs of a broad spectrum of users, by providing information suitable for the general public as well as experts, and allowing users to track emerging information over time. The Disease InfoSearch option allows users to specify the genetic disorder of interest, then links to pages of relevant resources, including information on diagnosis and treatment, genetics and genetic testing, clinical trials and PubMed-linked scientific research. NCBI Director David Lipman commented: "Genetic Alliance is dedicated to improving the lives of those with genetic disorders, and we share their goal of improving public access to information" (see press release).

Another subsidiary of the US National Institutes of Health (NIH), the Office of Rare Diseases (ORD) has released its first newsletter this month; Focus on Rare Diseases is to be produced quarterly. The ORD website also features the Genetic and Rare Diseases Information Center (GARD), and links to other sources of genetics information.

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