National Organization for Rare Disorders (NORD)

Who We Are
NORD was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, NORD has been a national steward and a steadfast partner helping those who battle and care for rare disease feel seen, heard, supported, and connected. We’re a full-service, mission-driven, and independent nonprofit reimagining a future where every person with a rare disease and their families live their best lives.

First and Only
NORD was the first national nonprofit to represent all individuals and families affected by rare disease. Today we’re the only organization working at the intersection of care, research, policy, and community for all rare diseases.

Our Positions and Priorities
NORD’s organizational priorities and policy positions are determined in partnership with our Board of Directors and patient organization membership and are focused on what is in the best interests of rare disease patients and their families. While NORD accepts funding from a variety of sources to support our mission, including the U.S. government, pharmaceutical and biotechnology companies, and individual donors, NORD has always prohibited those employed by the pharmaceutical and biotechnology industry from serving on NORD’s Board of Directors.