History of NORD

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 340 patient organization members, is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and patient services.

Our History

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. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For over 40 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most.

The vision that drives all NORD initiatives, including Running for Rare, is:

  • An 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