Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) is a federation of more than 140 nonprofit voluntary health organizations dedicated to helping people with rare "orphan" diseases and to assisting the groups that serve them. Orphan diseases, most of which are genetic in origin, are those affecting fewer than 200,000 people in the United States. More than 5000 rare disorders affect about 20 million Americans.
Responding to over 1 million inquiries each year, NORD attempts to educate the public and the medical community by distributing understandable information through its newsletters, publications, and databases; providing referrals to additional resources; and maintaining an extensive Web site. Through the Web, users can access NORD's Rare Disease Database (RDB), containing more than 1100 abstracts, as well as the Organization Database of support groups and the Orphan Drug Database. Complete RDB entries are available online at low cost, and printouts can be ordered from the NORD office.
NORD also maintains confidential patient networking for individuals and families. Since 1987, NORD has administered medication assistance programs for pharmaceutical companies, providing free prescription drugs from nine companies to thousands of uninsured, needy patients. In addition, the NORD grant program provides financial support to academic scientists for clinical research. [NORD; P.O. Box 8923; New Fairfield, CT 06812-8923 (800/999-6673 or 203/746-6518, Fax: -6481)]
Nord Publications
The third edition of the 675-page NORD Resource Guide lists more than 900 organizations that can benefit individuals with rare disorders and their families. The 1000-page Physicians' Guide to Rare Diseases contains information on over 900 such disorders, including symptoms and visual diagnostics signs.
[Orders: NORD, click on "Services/Products." The physicians' guide may also be ordered from Dowden Publishing Co. (800/707-7040 or 201/391-9100, Fax: -2778.]
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v10n1-2).
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