About

WashU Medicine has joined forces with over 25 million Americans living with a rare disease and health care advocates around the world to celebrate Rare Disease Day®. Hosted on February 28, Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.

According to the National Institutes of Health (NIH), a disease is rare if it affects less than 200,000 people in the United States. Over 25 million Americans live with a rare disease—and nearly half of these patients are children. For the over 7,000 known rare diseases, 90% are still without FDA-approved treatments.

Rare Disease Day is marked globally every year on the last day of February—the rarest date on the calendar—to underscore the nature of rare diseases and the challenges patients face. Rare Disease Day is sponsored in the United States by the National Organization for Rare Disorders (NORD®), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases.

5-year survival rate is lower for patients with a rare cancer than for those diagnosed with a more common cancer
5-year survival rate is lower for patients with a rare cancer than for those diagnosed with a more common cancer
72% of all rare diseases are genetic whilst others are the result of infections, allergies and environmental causes or are rare cancers.
72% of all rare diseases are genetic whilst others are the result of infections, allergies and environmental causes or are rare cancers.
200 million people worldwide living with a rare disease
200 million people worldwide living with a rare disease
6000+ identified rare diseases
6000+ identified rare diseases
The population of people with rare diseases equals that of the world's 3rd largest country
The population of people with rare diseases equals that of the world’s 3rd largest country
5% of the worldwide population rare disease are currently affected
5% of the worldwide population rare disease are currently affected
70% of genetic diseases start in childhood
70% of genetic diseases start in childhood
Equity for people living with rare disease is equitable access to diagnosis, treatment, health, social care and opportunity.
Equity for people living with rare disease is equitable access to diagnosis, treatment, health, social care and opportunity.
1 in 5 cancers is rare. The incidence for rare cancers is less than 6 individuals per 100,000 a year.
1 in 5 cancers is rare. The incidence for rare cancers is less than 6 individuals per 100,000 a year.
NORD: Rare Disease Center of Excellence badge

As a NORD Center of Excellence, Rare Diseases Day is part of WashU Medicine’s commitment to progressing care of rare diseases, encourage collaboration as well as sharing of best practices and expertise.

Questions?

Let us know if you have any questions. We will be happy to help.

Contact Us

Organizing committee