NEW YORK (Reuters Health) - Patients and their families can now gain free and immediate access to reliable information about genetic and rare diseases via the newly opened Genetic and Rare Disease Information Center, the National Institutes of Health (NIH) announced recently.

"We find that some people have been diagnosed with a rare disease or genetic condition and they can't find information about it or don't know where to look," Barbara Fuller, the National Human Genome Research Institute (NHGRI) branch chief for policy, education and outreach, told Reuters Health. "So (now) with one phone call they can find an information specialist who will do the research and provide them the information."

Launched in February 2002 by NHGRI in conjunction with the NIH's Office of Rare Diseases, the center is staffed with information specialists who are able to provide accurate and reliable information via telephone, e-mail, fax or regular mail about the more than 6,000 known genetic and rare diseases that affect more than 25 million individuals in the United States.

The information given by the specialists is culled from brochures, articles and Web sites published by reliable sources such as the NIH and the National Library of Medicine.

Many individuals in the lay public "don't know the right terms to use (when searching for information) or the right spelling" of medical terms, Fuller said. The specialists, in contrast, "know about diseases and know where to find information about diseases."

The information specialists are provided by the Genetic Alliance, a worldwide coalition of more than 300 lay advocacy organizations and health professionals.

"We welcome inquiries," Fuller said. "There's absolutely no cost and I think (inquirers) will find it a positive experience."

For further information or to inquire about a rare or genetic disease, contact the Genetic and Rare Diseases Information Center at (888) 205-2311 Monday through Friday from noon to 6 PM ET or via e-mail at gardinfo@nih.gov.

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