A bit about us

The National Organization for Rare Disorders, Inc (NORD) builds community and creates lasting impact by improving the health and wellbeing of people with rare diseases by driving advances in care, research, and policy.

Our motto is "Alone we are rare. Together we are strong” which embodies our approach to enable, energize, and inspire individuals to be forces for positive change.

Since our founding by families in the early 1980s, NORD has always put rare patients first. We serve as the hub of the rare community, leading efforts to connect patients and organizations with other stakeholders and driving progress for all.

There are more than 10,000 rare diseases impacting the lives of an estimated 30 million Americans. Fewer than 10% of these diseases have an FDA approved treatment and 50% of rare disease patients are children. Since each rare disease affects fewer than 200,000 Americans, information is scarce, patients are scattered around the nation and resources and specialists are limited, creating an environment in which individuals and families face a myriad of challenges that affect their quality of life, access to care, and health outcomes.

NORD’s Rare Disease Centers of Excellence is the first national network of U.S. hospitals and medical institutions dedicated to diagnosing, treating and researching all rare diseases.

How we'll spend the money you raise

Expanding access, developing new standards of care, and finding treatments and cures requires major coordination and these Centers are committed to sharing knowledge and best practices to improve care and advance research. Support will allow NORD to invest in the technology to connect and coordinate these Centers, providing a platform for collaboration and knowledge sharing between relevant clinicians / researchers in multiple medical and scientific disciplines.