In the late 1970s, individuals and families living with rare diseases felt alone and forgotten. There was very little being done to study their diseases or develop treatments.
In the early 1980s, families, advocates, and leaders of several rare disease patient organizations formed an ad hoc coalition to focus attention on this problem. That coalition was instrumental in passage of the Orphan Drug Act, a landmark bill that created financial incentives for the development of treatments for rare diseases.
In 1983, that coalition became the National Organization for Rare Disorders, or NORD. NORD will celebrate its 40th anniversary in 2023.
In the four decades since its founding, NORD has only continued to elevate our reach and strengthen the voice of the national and global rare disease community. Launched originally as a telephone and mail information clearinghouse, today NORD maintains a news-oriented website and active social media communities, administers medical assistance programs, provides publications and other educational materials for medical professionals, builds natural history studies and oversees research grants, and supports over 330 member organizations.
Since the passage of the Orphan Drug Act of 1983, the US Food and Drug Administration (FDA) has approved more than 500 orphan products and rare disease therapies, and orphan drugs currently make up more than 50% of new drug approvals at FDA. This is a beacon of hope for the over 25 million Americans living with one or more of the roughly 7,000 known rare diseases, over 90% of which still do not have an approved treatment.