Who We Are

What is Rare?

Rare is, by definition, genetic conditions and diseases that affect fewer than 200,000 people in the United States. Yet, they present a significant health care concern since there are almost 7,000 rare diseases, affecting more than 30 million Americans and their families.

  • Rare conditions may involve chronic illness, disability, and often premature death.
  • Rare is complex, and often with inadequate or no treatment, thereby representing a disproportionate share of health care spending.
  • Patients with rare conditions are frequently misdiagnosed or are undiagnosed.
  • Few drug companies conduct research into rare conditions since it is difficult to recover the costs of developing treatments for small, geographically dispersed populations.
  • To advance medical research on rare diseases, a research network facilitates collaboration, enrollment in studies and trials, and sharing of data.

​​Together, we are strong.

The RareKC Project was founded in 2015 to activate a change in the lives of those challenged by rare genetic conditions and diseases.

While individual rare conditions have small patient populations, collectively the rare disease community is larger than the AIDs and Cancer communities combined. Despite its size, the community lacks a unified voice, as only 15% of rare diseases have organizations or foundations providing support or driving research.
The RareKC Project is bringing together families impacted by rare conditions in the Kansas City area. 
​As individuals, our numbers are often too small to affect the significant changes needed to impact the future of rare. Our combined voices will create the advocacy network needed to achieve RareKC’s ultimate goal – to build a center of excellence for rare disease in Kansas City – the first of it’s kind in the country.