Institute for Pediatric Rare Diseases’ Momentum Continues to Accelerate
By Bob Thomas FSU College of Medicine
Rare Disease Day, recognized globally on the last day of February since 2008, is intended to raise awareness of the approximately 7,000 known rare diseases affecting 300 million people worldwide.
Rare Disease Day 2025 provided a forum for Florida State University and state leaders to lay out the plans for one of the College of Medicine’ s newest centers, the Institute for Pediatric Rare Diseases( IPRD).
“ The burden of rare diseases is enormous, not just on the children who are facing challenges every day but also on their families and our society as a whole,” Pradeep Bhide, Ph. D., IPRD director, told a standing-room-only crowd gathered in the college atrium Friday, Feb. 28.“ We are committed to changing the narrative.”
More importantly, Rare Disease Day was a platform to show the work already underway at the institute, which sprang from a meeting between state Rep. Adam Anderson and FSU President Richard McCullough less than two years ago.
“ I am completely blown away with the rapid pace and the progress that has been made,” Anderson said as he stood
near a display of posters showcasing 13 of the 23 then-current IPRD research projects, thanks to legislative and university funding.“ It has completely exceeded any expectations that I had.”
Those research projects represent the interdisciplinary collaboration of 20 scientists from seven departments across three FSU colleges.
“ At FSU, we believe in the power of science, education and collaboration to solve humanity’ s most pressing challenges,” McCullough said at the opening news conference.“ Through the work of the institute, we are paving the way for a brighter, healthier future for all children.”
Members of the FSU Board of Trustees were on hand, along with several families affected by rare diseases, some accompanied by their children.
Moriah and Nic George made the drive to Tallahassee from Palm Coast, Florida, with their 3-year-old son Luca, who is one of 60 children worldwide diagnosed with SPATA5L1 Disorder. The disorder includes a wide spectrum of symptoms – including hearing loss, lack of muscle development and control, and seizures.
22 FSUMED | MED. FSU. EDU