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"

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.



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