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