Pamela Gavin has been named as NORD’s new CEO. Learn more about Pamela

Who We Are

Since 1983, 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 nonprofit reimagining a future where every person with a rare disease, and their families live their best lives.

As patients, family members, clinicians and researchers, we are united by a single purpose — solve the greatest challenges and unmet needs in rare disease patient care, treatment and research.

First and Only

NORD was 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.

How We Do It


For many, we are a first step toward hope, action, and progress. Whether it is help searching for a diagnosis, a specialist, or clinical trials, we provide ease of access to world-class care and expertise.


We accelerate and advance innovation in rare disease care and treatment through research grants, studies, patient registries, partnerships, and our Rare Disease Centers of Excellence network.

Policy and Action

We are rooted in the advocacy that spurred a movement resulting in the passage of the world’s first law
incentivizing drug development for rare diseases—the Orphan Drug Act of 1983. We continue to fight for
life-changing laws, policies, and programs today.


We support and strengthen a diverse network of more than 340 Patient Advocacy Organizations that together serve more than a half million rare disease patients.

40 Years of Firsts

As the rare disease community and NORD celebrate 40 years of progress, we honor the dedication and passion of the patients, caregivers, researchers, clinicians, and government and industry partners who have made this journey together.  NORD remains energized with the hope that, together, we can continue to build on the accomplishments of the past four decades and improve the health and well-being for all people living with a rare disease and their families.

Click here to explore NORD’s 40-year history and major milestones that shaped the rare disease community