National Organization for Rare Disorders

7 Kenosia Avenue
Danbury, CT 06810

Phone: 203-744-0100
Fax: 203-263-9938


General Information:

The National Organization for Rare Disorders (NORD) is a 501(c)(3) patient advocacy organization that improves the health and well-being of patients living with rare diseases by improving care, accelerating research, and driving public policy. Our Corporate Council comprises over a hundred biopharmaceutical companies, clinical research organizations, and other stakeholders involved in the drug development process for orphan treatments. NORD’s membership includes more than 340 patient advocacy organizations and 40+ Rare Disease Centers of Excellence, including Yale New Haven Hospital.

NORD’s headquarters are in Danbury, CT, and satellite offices are in Quincy, Massachusetts, and Washington, D.C.

Research Activities:

NORD is a leader in patient-focused drug development (PFDD) on behalf of the rare disease community. Through our medical affairs and research teams, and in partnership with patient advocacy groups and regulatory bodies, we are accelerating research for rare diseases through the following mechanisms:

– NORD brings together teams of clinical experts in a nationwide network of cutting-edge facilities, with the goal to provide standards of specialized care and disease management for people living with rare disease and their families

– Our IAMRARE® program helps researchers to develop and conduct natural history studies and patient registries on our platform that is designed to collect disease-specific and disease-agnostic patient experience data in multiple languages.

– We provide seed grants for academic scientists to pursue studies related to the development of potential new diagnostics or treatments in order to provide preliminary data and attract funding from government or industry sponsors.