30 Years of Progress
Patient advocates played a key role in Congressional approval of the Orphan Drug Act. In the decade before 1983, only 10 new products had been developed by the pharmaceutical industry for rare diseases.
The Orphan Drug Act would provide financial incentives to encourage companies to develop treatments for small patient populations. However, it was stalled in Congress until Abbey Meyers and other representatives of patient organizations formed a coalition to get the legislation approved.
It was not an easy task, and it involved learning to work with Congress, the media and – most important of all – each other, but the patient advocates did their job well and the legislation was approved by Congress and signed by President Ronald Reagan on January 4, 1983.
Shortly afterward, the patient leaders held a meeting at which they decided to continue their partnership through an organization to represent all Americans affected by rare diseases. That organization was NORD.