First and Only

The National Organization for Rare Disorders (NORD®) is the leading independent nonprofit organization representing the more than 30 million Americans with rare diseases and supporting hundreds of patient advocacy organizations nationwide. 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. NORD is committed to identifying, treating, and curing rare disorders through programs of education, advocacy, research, and patient services.

Empowering Patients

Our motto is “Alone we are rare. Together we are strong.” This motto embodies our approach to enable, energize, and inspire individuals and advocates to be forces for positive change. We serve as a convener for progress built on what matters most to patients.

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