Author Archives: Hawken Miller

11-year-old With aHUS Patiently Waiting for a Kidney

On the outside, Khloe Sudol seems like a normal 11-year-old. The quiet, reserved girl is full of energy, filling her time with horseback riding, swimming, and school work. But on the inside, her kidneys have failed as a result of the ultra-rare disease atypical hemolytic uremic syndrome (aHUS), which…

New Streaming Channel Showcases Rare Disease Films

When the COVID-19 pandemic forced the postponement of a rare disease film festival originally slated for May, its organizers set out to find a new way to bring the films to an audience.  Co-founders Daniel DeFabio and Bo Bigelow, who are both fathers of children with…