Turning Scientific Breakthroughs into Lifesaving Treatments for Kids
On April 29, the FSU Institute for Pediatric Rare Diseases (IPRD) had the privilege of hosting MacKay Jimeson, CEO of Patients Rising, for an insightful presentation titled “Turning Scientific Breakthroughs into Lifesaving Treatments for Kids.”
Mr. Jimeson delivered a compelling message: In the field of pediatric rare diseases, scientific innovation is advancing rapidly, but access to these breakthroughs remains far too limited for many children. His talk shed light on the systemic barriers that prevent life-changing treatments from reaching the patients who need them most, including regulatory delays, outdated value frameworks, and insurance coverage obstacles.
As we continue to expand IPRD’s mission at the intersection of genomics, policy, and patient advocacy, Mr. Jimeson’s insights serve as a clear call to action. Innovation in the lab must be matched by innovation in how we deliver care.
We are grateful to MacKay Jimeson for joining us, and for his leadership in supporting access to rare disease therapies.
