Celebrating 20 Years of Service

The National Organization for Rare Disorders observed its 20th anniversary during 2003. NORD was established by members of patient support groups who worked together to get the Orphan Drug Act passed by Congress and signed by President Reagan in 1983. That legislation provides incentives for the development of treatments for rare disorders. Because the markets are small, companies might not otherwise make the investment.

In the decade before the Orphan Drug Act was enacted, only 10 new treatments for orphan diseases were developed. In the 20 years since it was passed, more than 200 new treatments for rare disorders have been approved by the U.S. Food and Drug Administration and an additional 900 are in various stages of development.

NORD's President, Abbey Meyers, was a key figure in the effort to get the Orphan Drug Act passed, and she has been with NORD from the beginning. Originally, NORD's mission was to provide information on rare disorders and support organizations to patients and members of their families. This remains one of its primary functions today.

Other services have been added over the years. A brief overview of NORD's programs today is as follows:

• Information Services: NORD provides information about rare diseases and referrals to patient organizations. On its Web site, it receives nearly 100,000 visits a month from patients, family members, teachers, school nurses, social workers, physicians, genetic counselors and others. Its staff members also respond to thousands of phone calls, e-mails, and letters every month.
  
  
• Medication Assistance Programs: NORD has more than 20 programs through which it helps patients obtain medications they could not otherwise afford or ones that are not yet on the market. Thousands of people are helped each year through these programs.
  
  
• Research: NORD administers research programs through which grants and fellowships are available to scientists interested in studying rare disorders. In many cases, NORD is able to provide funding for young researchers who may later devote their careers to the study of rare diseases.
  
  
• Advocacy: Through its Washington Office, NORD provides advocacy on issues such as funding for rare-disease research. Its leadership enables individuals and organizations concerned about specific disorders to work together for the greater good of all. NORD played a key role in generating support for important legislation enacted in 2002 (see our Washington Office page).
  
  
• A Sense of Community: Through its conferences and workshops, its Patient Networking service, and its referrals to disease-specific and umbrella organizations, NORD helps patients connect with others affected by the same or related disorders. This is particularly important for people affected by rare diseases.