The National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders, Inc. Logo

Basic Information

Address: 55 Kenosia Ave, PO Box 1968, Danbury, CT 06813-1968
Phone Number: Telephone: (203) 744-0100 Toll-free: (800) 999-6673 TTY: (203) 797-9590
Fax Number: (203) 798-2291

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Additional Information

President: Peter L. Saltonstall
Service Description: not-for profit organization
Mission Statement:

The National Organization for Rare Disorders (NORD) is a not-for-profit federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them. Established in 1983, NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Through its Rare Disease Database, NORD provides reports in understandable, layperson's terminology on more than 1,200 rare disorders. Through its Organizational Database, it provides referrals to more than 2,000 nonprofit organizations and government agencies that help patients and families affected by rare diseases. In addition to patient education, NORD provides educational materials for medical professionals, including a series of free booklets for physicians. It administers medication assistance programs and research grants and fellowships, and it provides advocacy on legislative matters of interest to the rare disease community. NORD is the national sponsor in the U.S. for Global Rare Disease Day, which is observed around the world every year on the last day of February.

Membership Fee: Individual Membership: Basic $30.00; Friend $50.00; Contributing $100.00
Eligibility Requirements: Individual memberships are for people who simply want to support the work NORD is doing and gain certain benefits in the process.
Area Served: International
Hours of Operation/Schedule: Monday - Friday, 9 AM to 5PM EST
Services Offered:
NORD provides information about diseases, referrals to patient organizations, research grants and fellowships, advocacy for the rare-disease community, and Medication Assistance Programs that help needy patients obtain certain drugs they could not otherwise afford.

NORD hosts periodic conferences for patients and patient support groups.

Fundraisers: NORD is a non-profit, voluntary health agency that exists to serve rare-disease patients and their families. Our primary sources of funding are contributions, membership fees, and revenues from the sale of our products, such as our books and Rare Disease Database reports. Most of the money donated to NORD goes directly to programs and services.

NORD was established in 1983 by patients and families who worked together to get the Orphan Drug Act passed. This legislation provides financial incentives to encourage development of new treatments for rare diseases.

Slogan: ...out of the darkness, into the light...