National Organization for Rare Disorders, Inc. - NORD
orphan@rarediseases.org
www.rarediseases.org 
Other Contact Information
55 Kenosia Avenue
PO Box 1968
Danbury,
CT 06813-1968
800-999-6673 (Voice - Toll-free, General Information)
203-744-0100 (Voice)
203-798-2291 (FAX)
203-797-9590 (TDD)
Description
The National Organization for Rare Disorders, Inc. (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Office hours are from Monday-Friday 9am-5pm EST. Voice mail is available. NORD's web site also includes a searchable version of the Rare Diseases Database (RDB). There are also additional NORD databases you may access.
Print Resources
Reports available on over 1,150 rare (orphan) diseases. Serial Publication: Orphan Disease Update, newsletter, mailed to members three times a year. First-time telephone inquirers may receive one disease report at no charge. Additional reports are available for $7.50 each (to help cover printing and mailing costs). Other publications: NORD Resource Guide; free booklets for physicians, including The Pediatrician's Guide to Tyrosinemia Type I and The Physician's Guide to Pompe Disease. Interested individuals can also join as members to network with other patients and their families. The membership fee for this service is $30.00 per year.
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