National Organization for Rare Disorders

NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.

Patient Assistance Programs

Get help with access to medication, diagnostics, caregivers support,
and other needs.

Get support

Rare Disease Database

Learn more about 1,200 rare diseases
through our comprehensive database.

Search now

Centers of Excellence

NORD® Rare Disease Centers of Excellence are diagnosing and treating thousands of rare disease patients.

Learn More

IAMRARE® Program

Assist researchers throughout the world better understand and treat rare diseases by enrolling in our registry and sharing your experiences.

Get involved

Knowledge is Empowering

You or a loved one has received a diagnosis. Now what? Gaining knowledge, connecting with advocacy organizations, and learning about treatment at places like the Centers for Excellence are the next steps.

Learn about living with a rare disease

How Can We Help You?

We help inform and advocate for legislation and policies that reflect the needs of rare disease patients and their families.

We provide information about rare diseases, patient organizations and other resources. We also promote awareness of rare diseases among physicians and other medical professionals.

We pioneered Patient Assistance Programs in 1987. Today, NORD programs include free drug, co-pay and premium assistance, travel/lodging assistance for clinical trials, expanded or emergency access, and more.

Disease-specific patient organizations are crucial partners in our mission to serve rare disease patients and their families. That’s why we provide capacity building and mentorship services to start-up and established organizations.

Our grant programs have resulted in numerous published advances and at least two FDA-approved therapies.

NORD believes in the power of collaboration. It is the foundation upon which NORD was built. NORD works with partners in the patient community, government, academia, and industry who share the ultimate goal of identifying, treating, and curing rare diseases. In addition to the partnerships listed below, NORD works with many national partners to achieve its advocacy goals.

Our Mission

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

Advocating for Patient-Centered, Data-Driven Policy

NORD helps drive more effective government policies by elevating the voice of the rare disease community.

Our Rare Disease Policy in Action
“I just hope I can leave some footprints that matter --- to help pave the way” 
—Regina Bogar, Association for Creatine Deficiencies

Finding Support Through Advocacy Organizations

Patient advocacy organizations play a vital role in helping people with rare diseases live their best and fullest lives. We can help you find one or even start your own.

Find your rare disease community
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National Organization for Rare Disorders