What is Rare?

Individually our numbers are small, but RARE is common among us all.

“When we hear the sound of hooves, we think ZEBRAS, not HORSES"

NORD Rare Disease Infographic 2

*Graphics were retrieved from the National Organization on Rare Diseases

80% of rare diseases are genetically based,

and are often chronic and life-threatening.

RARE in Kansas City

Based on national statistics, we estimate:

250,000 individuals have been impacted by a rare disease
Approximately 125,000 of those individuals are children
37,000 babies will not see their 5th birthday
Estimated 3,600 babies will be born with rare genetic conditions

Patients with RARE DISEASES are frequently misdiagnosed or undiagnosed.

It can take several years to diagnose a rare disease.
Many rare diseases have nonspecific symptoms, which makes diagnosis more challenging.
Rare diseases can also be hard to diagnose because they are unusual and, individually, uncommon.

Over

6900

RARE DISEASES exist, and fewer than 500 have FDA-approved treatments

ONLY 5% of Rare Diseases have treatments

NORD Rare Diseases infographic

Families and private foundations provide about 3% of ALL medical research and funding in the U.S.

To advance medical research on rare diseases, a research network facilitates collaboration, enrollment in studies, trials, and sharing of data.

What can you do to help?

Donate and Volunteer with us.

ONLY 5% of Rare Diseases have treatments