We exist to make a positive difference

Our mission

The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in policy, research, and care.

Our vision

Across NORD, we adhere to a shared vision that guides our decisions and actions. This vision dictates our efforts to help improve the health and well-being of people with rare diseases.

  • 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 diagnostics and therapies 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 diagnostic tests and therapies for all rare disorders
  • A regulatory environment that encourages development and timely approval of safe and effective diagnostics and treatments for patients with rare diseases

Empowering patients

Our approach is to empower individuals and help advocates be forces for positive change. We serve as a convener for progress built on what matters most to patients.

Our history

Founded by patients and their family members, we have always believed in our motto: “Alone we are rare. Together we are strong.”

Why support us?

No one should deal with a rare disease alone. We work tirelessly to advocate for policy change federally and locally, to support individuals and families, to drive impactful research, to educate and raise awareness, and provide evidence-based solutions.