The National Organization for Rare Disorders (NORD)


Database Subscriptions

Many libraries, schools, universities, and hospitals subscribe to NORD’s Rare Disease Database for unlimited access to reports on more than 1,150 diseases.

Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

Search this database for reports on more than 1,150 diseases.

View sample report

Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office

NORD's Washington OfficeRead about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

Helping NORD

How Your Money is Used

NORD is a national charity that was formed in 1983 by the individuals and organizations who supported the Orphan Drug Act, an important piece of legislation that provides incentives to encourage the development of new treatments for rare disorders. As a charity, it relies upon donated dollars to fulfill its mission of providing information and encouragement to rare-disease patients and their families.

What is a rare disorder?
A rare disorder is any disease that is known to affect fewer than 200,000 people in the United States. This is the definition used by the U.S. Food and Drug Administration (FDA) to determine whether a treatment may be eligible for “orphan” drug status.

How many rare disorders are there?
According to the National Institutes of Health (NIH), there are approximately 6,000 rare diseases affecting more than 25 million Americans. Even though each disease may affect only a small number of people, rare diseases collectively have a significant impact.

Why should you support NORD?
In 2002 and 2003, NORD was selected by Worth magazine as one of the 100 best charities in America. It was chosen for this citation because it uses donated dollars effectively to provide services that truly make a difference. With a small but hard-working staff, and the voluntary support of many of the nation’s best rare-disease physicians, NORD has served since 1983 as a central source of information and assistance for patients, families, and health-care providers. In many cases, the services NORD provides to patients and families would not be available if NORD did not exist.

How are donations used?
NORD’s administrative and fund-raising costs are very low when compared with those of many other charities. If you would like to see the numbers, request a copy of our annual report for any recent year and we will be happy to send it to you. Most of the money donated to NORD goes directly to programs and services that help rare-disease patients and their families. You can read about those services on this web site.

What are “In Honor or Memory” Gifts?
You can make a donation to NORD in honor of, or in memory of, a friend or loved one. To do this, follow the instructions on our donation page. The person being honored, or the family of the person being memorialized, will receive a card from NORD acknowledging your gift. In addition, NORD publishes the names of all who are honored or memorialized in this way in its Orphan Disease Update newsletter. For additional information on this service, or any other aspect of donating to NORD, contact our Development Office.

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ABOUT | CONTACT NORD

Since 1983, working toward the prevention, treatment, and cure of rare “orphan” diseases.

Did you know that NORD administers programs to help people obtain medications they could not otherwise afford or that are not yet on the market? Click here to read about NORD's current Medical Assistance programs.

One of 100 Best Charities

Worth Magazine has chosen NORD as one of the 100 best charities in America.

[Go to Article]

NORD Tribute Banquet
Twice a year, NORD hosts events that draw together the rare-disease community. At the Tribute Banquet, held in the spring, individuals, legislators, and corporations are honored for specific achievements.

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Last modified Thursday, January 24, 2008