National Organization for Rare Disorders
Encyclopedia
The National Organization for Rare Disorders (NORD) is an American non-profit organization
aiming to provide support individuals with rare disease
s by advocating and funding research, education, and networking among service providers. It was founded in 1983 by Abbey Meyers, along with individuals with rare diseases leaders of rare disease support groups, and is a 501(c)3 tax exempt
organization.
s, or drugs for treating rare diseases. They succeeded in getting the United States Congress
to pass the Orphan Drug Act (ODA) in early 1983.
The initial coalition was led by Abbey Meyers, whose son had Tourette syndrome
. Tourette syndrome is not a rare disorder, but Meyers' son was helped by an orphan drug. After passage of the Orphan Drug Act the coalition founded NORD with Meyers as its president. In 2007 Meyers announced her retirement from the NORD presidency; the president is now Peter Saltonstall.
Since its founding NORD continued to grow with the help of federal
grant
s and donations.
, and on the development of medical device
s); spreading information about rare diseases; and helping individuals with rare diseases afford medication and treatment. In February 2009, NORD sponsored Rare Disease Day
in the United States; this was the first time Rare Disease Day was observed in the United States (it was first observed in Europe
in February 2008).
Non-profit organization
Nonprofit organization is neither a legal nor technical definition but generally refers to an organization that uses surplus revenues to achieve its goals, rather than distributing them as profit or dividends...
aiming to provide support individuals with rare disease
Rare disease
A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population.Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear...
s by advocating and funding research, education, and networking among service providers. It was founded in 1983 by Abbey Meyers, along with individuals with rare diseases leaders of rare disease support groups, and is a 501(c)3 tax exempt
Tax exemption
Various tax systems grant a tax exemption to certain organizations, persons, income, property or other items taxable under the system. Tax exemption may also refer to a personal allowance or specific monetary exemption which may be claimed by an individual to reduce taxable income under some...
organization.
History
The organization grew out of an "informal coalition" of support groups and families called together in 1982 to advocate legislation supporting development of orphan drugOrphan drug
An orphan drug is a pharmaceutical agent that has been developed specifically to treat a rare medical condition, the condition itself being referred to as an orphan disease...
s, or drugs for treating rare diseases. They succeeded in getting the United States Congress
United States Congress
The United States Congress is the bicameral legislature of the federal government of the United States, consisting of the Senate and the House of Representatives. The Congress meets in the United States Capitol in Washington, D.C....
to pass the Orphan Drug Act (ODA) in early 1983.
The initial coalition was led by Abbey Meyers, whose son had Tourette syndrome
Tourette syndrome
Tourette syndrome is an inherited neuropsychiatric disorder with onset in childhood, characterized by multiple physical tics and at least one vocal tic; these tics characteristically wax and wane...
. Tourette syndrome is not a rare disorder, but Meyers' son was helped by an orphan drug. After passage of the Orphan Drug Act the coalition founded NORD with Meyers as its president. In 2007 Meyers announced her retirement from the NORD presidency; the president is now Peter Saltonstall.
Since its founding NORD continued to grow with the help of federal
Federal government
The federal government is the common government of a federation. The structure of federal governments varies from institution to institution. Based on a broad definition of a basic federal political system, there are two or more levels of government that exist within an established territory and...
grant
Grant (money)
Grants are funds disbursed by one party , often a Government Department, Corporation, Foundation or Trust, to a recipient, often a nonprofit entity, educational institution, business or an individual. In order to receive a grant, some form of "Grant Writing" often referred to as either a proposal...
s and donations.
Scope
NORD's operations include funding research on treatment and cures for rare diseases; lobbying for legislation to benefit the rare diseases community (in addition to the Orphan Drug Act, NORD has helped bring about legislation on publicizing clinical trials on the InternetInternet
The Internet is a global system of interconnected computer networks that use the standard Internet protocol suite to serve billions of users worldwide...
, and on the development of medical device
Medical device
A medical device is a product which is used for medical purposes in patients, in diagnosis, therapy or surgery . Whereas medicinal products achieve their principal action by pharmacological, metabolic or immunological means. Medical devices act by other means like physical, mechanical, thermal,...
s); spreading information about rare diseases; and helping individuals with rare diseases afford medication and treatment. In February 2009, NORD sponsored Rare Disease Day
Rare Disease Day
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families...
in the United States; this was the first time Rare Disease Day was observed in the United States (it was first observed in Europe
Europe
Europe is, by convention, one of the world's seven continents. Comprising the westernmost peninsula of Eurasia, Europe is generally 'divided' from Asia to its east by the watershed divides of the Ural and Caucasus Mountains, the Ural River, the Caspian and Black Seas, and the waterways connecting...
in February 2008).
External links
- Official site
- NORD profile on GuideStarGuideStarGuideStar USA, Inc. is an information service specializing in reporting on U.S. nonprofit companies. In 2010, their database contained over 5 million IRS Forms 990 filings on 1.9 million organizations.....
- NORD Support Community on Inspire.com