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NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 280 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

History of NORD

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 instrument in the Orphan Drug Act of 1983, which created financial incentives for the development of treatments for rare diseases.

Since then, NORD has been leading efforts to connect patients and patient organizations with other stakeholders and driving progress for all. NORD is here to support every member of the rare disease community with programs and services focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases.

The vision that drives all NORD initiatives, including the RareAction Network®, 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

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