Seg. 1: Rare Diseases. Seg. 2: Respect The River | KCUR

Seg. 1: Rare Diseases. Seg. 2: Respect The River

Feb 25, 2019

Segment 1: A Kansas City non-profit is advocating for people with rare diseases.

When you have a disease that's common, you can expect a swift diagnosis and a level of understanding from friends and family. But that might not be the case if your condition is rarely seen and little-understood, even by medical professionals. Hear about the obstacles facing patients with rare diseases and their families

  • Janell Ridenour, physician's assistant & parent of a child with Rubenstein-Taybi
  • Angela Van Batavia, diagnosed with Common Variable Immunodeficiency
  • Kelly Ranallo, founder, RareKC

Segment 2, beginning at 37:41: How Kansas City fell out of love with the river that runs through it, and the researcher who wants to help us fall in love again.

When Amahia Mallea was writing a dissertation about the Missouri River, she tried to ride her bike along it; she discovered that although Kansas City shaped and was shaped by the river, it was almost impossible to access. Her attempt to understand why brings us the story of a tumultuous relationship between a city and a waterway.