CU Anschutz Medical Campus to host Rare Disease Day Colorado on Feb. 28
All Sophie Rosenberg and her parents should be worrying about is Kindergarten and playdates. Instead, hospital visits and leg braces overshadow the 5-year-old's life, and her parents dedicate their lives to the search for a miracle.
Sophie has multicentric carpotarsal osteolysis syndrome, or MCTO, a condition so rare, it's not well understood. Fewer than 60 cases of MCTO have been reported in the medical literature, leaving her doctors with more questions than answers.
But her multidisciplinary care team is working hard to change the landscape.
For the Rosenbergs and families like them, the University of Colorado Anschutz Medical Campus offers hope. As one of only 31 National Organization for Rare Disorders (NORD) Rare Disease Centers of Excellence in the country, the campus is part of a network equipped to rapidly advance progress.
Leading efforts as a NORD Center of Excellence, CU School of Medicine faculty Shawn McCandless, MD, and Matthew Taylor, MD, PhD, along with Chief Research Informatics Officer Melissa Haendel, PhD, are harnessing expertise and resources to serve the 30 million Americans with rare diseases, two-thirds of those children.
