Rare Disease Facts & Statistics
When it comes to understanding rare disease, start here. Rare diseases are an urgent public health challenge affecting families in every community across the United States and around the world – no one is immune.
Whether you're newly diagnosed, caring for a loved one, providing clinical care, conducting research, or advocating for policy change, the National Organization for Rare Disorders (NORD®) is dedicated to supporting your journey and elevating awareness of rare disease.
Watch 10 Things You May Not Know About Rare Diseases
Download Rare Disease Fact Sheet
Watch 10 Tips for Newly Diagnosed Rare Disease Patients and Families
Rare Disease at a Glance
1 in 10 Americans live with a rare disease, half of whom are children.
Of more than 10,000 known rare diseases, fewer than 5% have an approved treatment.
People living with rare disease face medical costs that are 3-5 times higher than people with non-rare conditions.
It can take five or more years on average for a person with a rare disease to find a diagnosis.
Who We Are
Founded in 1983 by a group of parents, caregivers, and advocates – people just like many of you – NORD’s mission is to improve the health and well-being of the more than 30 million Americans living with rare diseases by driving advances in care, research, and policy.
Change is only possible through collaboration across the entire rare disease landscape, which is why our motto is:
Alone we are rare. Together we are strong.®
