What is a rare disease?
NORD uses the same definition that the U.S. Food and Drug Administration uses: A rare disease is one that affects fewer than 200,000 Americans at any given time.
How many rare diseases are there?
According to the National Institutes of Health, there are 6,000 rare diseases affecting 25 million Americans.
How old is NORD?
It was established in 1983, the same year the Orphan Drug Act was passed by Congress and signed into law by President Ronald Reagan. NORD's president, Abbey Meyers, is considered the primary consumer advocate responsible for passage of the Orphan Drug Act.
What is the Orphan Drug Act?
It provides incentives for companies to develop treatments for rare diseases.
Has this legislation been successful?
Yes. During the decade before 1983, only 10 new treatments were developed for rare diseases. Since 1983, more than 1,150 products have entered the research pipeline and more than 245 have been approved for marketing.
What services does NORD provide?
- Information about diseases and referrals to patient organizations
- Medication assistance to help needy people obtain certain drugs free of cost
- Research grants and fellowships
- Advocacy on public policy issues
In 2004, NORD administered the distribution of more than $47 million worth of free medications. It also awarded 20 research grants and 3 fellowships with a total value of $804,538.
Has NORD won honors or awards?
In 2003, 2004 and 2005, it has received a 4-star (exceptional) rating from Charity Navigator, a non-profit organization that evaluates 3,400 American charities. NORD has been named one of America's "100 best charities" by Worth magazine.
Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.