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What is a Rare Disease?
A Rare Disease is any disease that affects fewer than 200,000 people in the U.S., according to the National Institutes of Health. Because there are more than 7,000 rare diseases, 25 to 30 million Americans are estimated to be currently living with rare diseases, including over 450,000 Wisconsinites. More than 90% of rare diseases lack a treatment approved by the Food and Drug Administration.
Visit the Rare Disease Database for current information on which diseases are classified as rare.
NORD Rare Disease Centers of Excellence
The University of Wisconsin Center for Rare Diseases has been selected as a National Organization for Rare Disorders (NORD) Rare Disease Center of Excellence.
The NORD Rare Disease Center of Excellence(CoE) program brings together teams of clinical experts in a nationwide network of cutting-edge facilities, with the goal to provide standards of specialized care and disease management for people living with rare disease and their families.
NORD’s Rare Disease CoE Program is the first-ever designation program dedicated to all rare diseases and the patients impacted by them. The centers that form the NORD CoE network will work in partnership to share expertise, advance education, define standards and protocols, and shape the field of rare disease care, ultimately enabling rare disease patients to better navigate their diagnostic journey and find qualified medical homes for their complex medical conditions.
To find a NORD CoE designated center near you, please visit the official NORD website here.