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History of Leadership

In the late 1970s and early ‘80s, patients and families living with rare diseases felt alone and forgotten. Very little was being done to study these diseases or develop treatments. Leaders of several rare disease patient organizations formed an ad hoc coalition to focus attention on this problem. That coalition became NORD and was instrumental in the Orphan Drug Act of 1983, which created financial incentives for the development of treatments for rare diseases.

Since then, NORD has served as the hub of the rare disease community, leading efforts to connect patients and patient organizations with other stakeholders and driving progress for all.  View the timeline below of highlights through the years.


History of Leadership

For many years, people with rare diseases walked alone. Patients and their families coped with daunting medical and financial issues with few resources and no one to guide the way. Then, a small group of patient advocates formed a coalition to unify this community and mobilize support to pass the Orphan Drug Act. In 1983, the coalition became NORD, the National Organization for Rare Disorders. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and family services for those who need them most.


Our Vision

The vision that drives all NORD initiatives is:

  • A national awareness and recognition of the challenges endured by people living with rare diseases;
  • A culture of innovation that supports basic and translational research to create diagnostic tests and therapies for all rare diseases;
  • Access for all patients to the diagnostics and therapies that will extend and improve their lives.
  • A regulatory environment that encourages development and timely approval of safe, effective diagnostics and treatments.