Inside Colorado’s Battle Against Rare Diseases

In November 2021, the University of Colorado Anschutz Medical Campus—which includes UCHealth University of Colorado Hospital and Children’s Hospital Colorado (CHC)—was designated a Rare Disease Center of Excellence by the National Organization for Rare Disorders (NORD), the nation’s leading advocacy organization on rare diseases.

“We’ve been doing rare disease work and research for decades, although it’s been happening in a way that’s not very structured across the campus,” says Matthew Taylor, director of adult clinical genetics at the CU School of Medicine. “Now that we have this center designation, we’ll be able to organize all of our rare disease services and be in a better position for patients to connect with us more easily.”

Jennifer Taylor-Cousar, a pulmonologist at National Jewish Health [and professor of medicine at CU School of Medicine], knows how difficult it is for doctors to witness patients struggling to find medications. “These drugs can be very, very expensive, and we see a lot of patients fall through the cracks,” Taylor-Cousar says. “It’s incredibly hard to watch.”