- Donate
- Understanding Rare Disease
- Living with a Rare Disease
- Community Support
- Advancing Research
- Driving Policy
- Get Involved
- Rare Disease News
- Resource Library
- About Us
- For Clinicians & Researchers
- For Patient Organizations
NORD was founded after the passage of the Orphan Drug Act of 1983 (ODA) to formalize the coalition of patient advocacy groups that were instrumental in passing that landmark law. Since then, 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, and independent 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.
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’s organizational priorities and policy positions are determined in partnership with our Board of Directors and patient organization membership and are focused on what is in the best interests of rare disease patients and their families. While NORD accepts funding from a variety of sources to support our mission, including the U.S. government, pharmaceutical and biotechnology companies, and individual donors, NORD has always prohibited those employed by the pharmaceutical and biotechnology industry from serving on NORD’s Board of Directors.
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.
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.
Your donation will help more than 30 million Americans with a rare disease navigate their diagnosis, receive financial assistance, and access the care and support they deserve. Make your tax-deductible gift today!