NORD builds community and creates a lasting impact

Our mission

Improving the health and well-being of people with rare diseases by driving advances in care, research, and policy.

Our vision

Across NORD, we adhere to a shared vision that guides our efforts to help improve the health and wellbeing of people with rare diseases.

We strive for:

  • A national awareness and recognition of the challenges faced by people living with rare diseases and the associated costs to society.
  • A nation where people with rare diseases can secure access to care that extend and improve their lives.
  • A social, political, and financial culture of innovation that supports both the basic and translational research necessary to create tests and therapies for all rare disorders.
  • A regulatory environment that encourages development and timely approval of safe and effective treatments for patients with rare diseases.

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.

Our Values

  • Compassion: We commit to understanding the perspectives and circumstances of others and strive to make a difference.
  • Integrity: We are respectful, genuine, and accountable in all we do.
  • Innovation: We are passionate visionaries working to create a better future for the rare community.
  • Inclusion: We foster a sense of belonging and community by seeking out and including diverse perspectives.
  • Collaboration: We work intentionally toward common goals and support others to reach their full potential.