Mission Statement
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, 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.
What is A Rare Disorder?
A rare or "orphan" disease affects fewer than 200,000 people in the United
States. There are more than 6,000 rare disorders that, taken together, affect
approximately 25 million Americans. For almost twenty years, NORD has served as
the primary non-governmental clearinghouse for information on rare disorders. NORD also
provides referrals support groups and other sources of assistance.
Our Sources of Funding
NORD is not a government agency. It 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. Copies of our annual report are available upon request.
Founded in 1983
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.
NORD Services and Programs
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.
Sources of Content
NORD's Rare Disease Database reports are written by NORD medical writers and reviewed
by physicians. In some cases, the reports are written by physicians. Other content
on NORD's Web site is written by NORD staff members.
Meet the NORD Board of Directors and our Medical Advisory Committee.
View a list of NORD's Member Organizations.