WATCH: Axios’ @TReedinDC hosts a convo on the future of rare diseases, feat. @ncats_nih_gov Acting Director @jonirutter and @RARE_X_ Founder @nicoleboice.
trib.al/uzSmJNe
trib.al/uzSmJNe
@TreedinDC @ncats_nih_gov @jonirutter @RARE_X_ @nicoleboice .@jonirutter On medical costs for rare diseases: "If you think about the U.S. alone, that's $400 billion in direct medical costs per year that we're spending on rare diseases. This is a huge health care burden that we wanted to really understand and actually put a number on." 
@TreedinDC @ncats_nih_gov @jonirutter @RARE_X_ @nicoleboice .@nicoleboice: "There's three really big challenges that face rare disease: data silos, the lack of structured and appropriate data for research, as well as no data."
@TreedinDC @ncats_nih_gov @jonirutter @RARE_X_ @nicoleboice .@nicoleboice On improving care for rare diseases: "We're building a collaborative environment with different partners...to really help usher this and patients forward in a streamlined, easy way. Again, to try to deburden and help accelerate this whole path to future treatments."
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