The National Organization for Rare Disorders (NORD) is an

American American(s) may refer to: * American, something of, from, or related to the United States of America, commonly known as the "United States" or "America" ** Americans, citizens and nationals of the United States of America ** American ancestry, pe ...

non-profit organization A nonprofit organization (NPO) or non-profit organisation, also known as a non-business entity, not-for-profit organization, or nonprofit institution, is a legal entity organized and operated for a collective, public or social benefit, in co ...

aiming to provide support for individuals with

rare disease A rare disease is any disease that affects a small percentage of the population. In some parts of the world, an orphan disease is a rare disease whose rarity means there is a lack of a market large enough to gain support and resources for discov ...

s by advocating and funding research, education, and networking among service providers. It was founded in 1983 by Abbey Meyers, along with individuals and rare diseases leaders of rare disease support groups, and it is a

501(c)3 A 501(c)(3) organization is a United States corporation, trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of the 29 types of 5 ...

tax exempt Tax exemption is the reduction or removal of a liability to make a compulsory payment that would otherwise be imposed by a ruling power upon persons, property, income, or transactions. Tax-exempt status may provide complete relief from taxes, redu ...

organization.

History

The organization grew out of an "informal coalition" of support groups and families called together in the late 1970s to advocate legislation supporting development of

orphan drug An orphan drug is a pharmaceutical agent developed to treat medical conditions which, because they are so rare, would not be profitable to produce without government assistance. The conditions are referred to as orphan diseases. The assignment of ...

s, or drugs for treating rare diseases. They succeeded in getting the

United States Congress The United States Congress is the legislature of the federal government of the United States. It is Bicameralism, bicameral, composed of a lower body, the United States House of Representatives, House of Representatives, and an upper body, ...

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 or Tourette's syndrome (abbreviated as TS or Tourette's) is a common neurodevelopmental disorder that begins in childhood or adolescence. It is characterized by multiple movement (motor) tics and at least one vocal (phonic) ...

. Tourette syndrome was estimated by the

National Institutes of Health The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the lat ...

to affect 100,000 people in the United States. Meyers' son was helped by an experimental drug that the manufacturer ceased to develop because they assumed it would not be profitable enough. 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 L. Saltonstall. Since its founding in 1983, NORD continued to grow with the help of federal

grant Grant or Grants may refer to: Places *Grant County (disambiguation) Australia * Grant, Queensland, a locality in the Barcaldine Region, Queensland, Australia United Kingdom * Castle Grant United States * Grant, Alabama * Grant, Inyo County, ...

s and donations.

Activities

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

Internet The Internet (or internet) is the global system of interconnected computer networks that uses the Internet protocol suite (TCP/IP) to communicate between networks and devices. It is a '' network of networks'' that consists of private, p ...

, to give the public and medical professionals warning about projected drug shortages, and on the development of

medical device A medical device is any device intended to be used for medical purposes. Significant potential for hazards are inherent when using a device for medical purposes and thus medical devices must be proved safe and effective with reasonable assura ...

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 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. The European Organisation ...

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 is a large peninsula conventionally considered a continent in its own right because of its great physical size and the weight of its history and traditions. Europe is also considered a Continent#Subcontinents, subcontinent of Eurasia ...

in February 2008). NORD has also helped other countries to develop orphan drug legislation in their nations.

Organization

Corporate Council

NORD maintains a Corporate Council made up of companies in the

pharmaceutical A medication (also called medicament, medicine, pharmaceutical drug, medicinal drug or simply drug) is a drug used to diagnose, cure, treat, or prevent disease. Drug therapy ( pharmacotherapy) is an important part of the medical field and ...

biotechnology Biotechnology is the integration of natural sciences and engineering sciences in order to achieve the application of organisms, cells, parts thereof and molecular analogues for products and services. The term ''biotechnology'' was first used ...

and

clinical research Clinical research is a branch of healthcare science that determines the safety and effectiveness ( efficacy) of medications, devices, diagnostic products and treatment regimens intended for human use. These may be used for prevention, treat ...

industries. Members include:

Partnerships

NORD is engaged in partnerships with a number of patient advocacy groups and industry organizations. Partners include: * Alliance for a Stronger FDA * Alliance for Healthcare Reform * Coalition for Accessible Treatments (CAT) *

EURORDIS The European Organisation for Rare Diseases (EURORDIS) is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, that promotes research on rare diseases and commercial development ...

-Rare Diseases Europe *

National Health Council The National Health Council (NHC) is a nonprofit association of health organizations. Its members are national health-related organizations, including leading patient advocacy groups such as the American Cancer Society, the American Heart Associ ...

* Research!America * State Access to Innovative Medicines Coalition (SAIM) *

United States Pharmacopeia The ''United States Pharmacopeia'' (''USP'') is a pharmacopeia (compendium of drug information) for the United States published annually by the United States Pharmacopeial Convention (usually also called the USP), a nonprofit organization that ...

(USP)

References

External links

Official siteNORD
profile on

GuideStar Candid is an information service specializing in reporting on U.S. nonprofit companies. In 2016, its database provided information on 2.5 million organizations.Wyland, Michael. "GuideStar Introduces Program Metrics Section for Nonprofit Profile ...

{{DEFAULTSORT:National Organization For Rare Disorders Medical and health organizations based in Connecticut Health charities in the United States Patients' organizations Charities based in Connecticut