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New NORD Publications
The National Organization for Rare Disorders (NORD) recently published the third edition of the NORD Resource Guide. The 675-page book contains more than 900 disease-specific and umbrella organizations, support groups, clearinghouses, agencies, and registries that can benefit individuals and families affected by rare disorders and disabilities. The guide describes each organization's mission and services and gives the telephone number; mailing, e-mail, and home page addresses; and listing of the rare disorders supported by the organization. A comprehensive index enables readers to locate organizations by disease name or category. Guide, $39.95 plus $5.00 S&H each. Reprints of disease reports from Rare Disease Database, $7.50 per copy. [NORD; P.O. Box 8923; New Fairfield, CT 06812-8923 (800/999-6673 or 203/746-6518, Fax: -6481, orphan@nord-rdb.com, http://www.rarediseases.org/]In cooperation with a publisher, NORD has produced the second edition of the 1000-page Physicians' Guide to Rare Diseases, a reference based on the Rare Disease Database. This clinical tool provides a quick approach to identifying symptoms and contains a full-color atlas of visual diagnostic signs; a complete reference to "orphan drugs," including those in development; references and resources; and a comprehensive index. $78. [Dowden Publishing Co. (800/707-7040, Fax: 201/391-2778)].
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NORD is a federation of voluntary health organizations dedicated to helping
people with rare "orphan" diseases and to assisting the organizations that
serve them. Orphan diseases, most of which are genetic in origin, are those
that affect fewer than 200,000 people in the United States. More than 5000
rare disorders affect about 20 million Americans. NORD's primary goal is to educate the public and the medical community by serving as an international clearinghouse for understandable information through its Rare Disease Database and referrals to additional resources. Each year, NORD responds to over 1 million inquiries. NORD advocates for public policy issues on behalf of families with rare diseases. Current issues that are important for the rare-disease community include genetic nondiscrimination, privacy and confidentiality of medical records, health insurance and managed care reform, and research.
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