2026 News & Events
IPRD COMMEMORATES RARE DISEASE DAY 2026 WITH NATIONAL LEADERS IN GENOMICS
The Florida Institute for Pediatric Rare Diseases (IPRD) marked Rare Disease Day 2026 on February 27 with multiple events that highlighted the institute’s expanding role as Florida’s hub for genomic medicine, clinical diagnostics, family-centered engagement and rare disease research. The program convened national leaders in clinical genomics, diagnostics and academic medicine for a discussion focused not only on newborn genome sequencing but also on the broader ecosystem required to advance rare disease care.
An estimated 30 million Americans and 300 million people worldwide are living with a rare disease. For many families, the journey to a diagnosis can take years. Clinical whole genome sequencing and coordinated research-to-clinic pipelines offer powerful opportunities to shorten and ultimately end, this diagnostic odyssey.
Symposium
The morning symposium featured a keynote address by Eric Green, M.D., Ph.D.,Chief Medical Officer of Illumina, followed by a roundtable discussion moderated by David H. Ledbetter, Ph.D., FACMG, IPRD Senior Associate Director for Precision Medicine.
A central topic of the discussion was the Sunshine Genetics Act, which positions Florida as a national leader in newborn genome sequencing and precision public health. Representative Adam Anderson’sleadership has catalyzed statewide efforts to provide families with an early understanding of their child’s health.
The symposium also highlighted IPRD’s rapidly growing diagnostic, research and family-engagement programs. The launch of the IPRD Diagnostic Laboratory, in partnership with Quest Diagnosticsand with support from Illumina Laboratory Services, represents an important milestone. The lab will offer clinical whole genome sequencing and expert interpretation services for patients across Florida and beyond, strengthening the state’s ability to deliver faster and more accurate diagnoses for genetic disorders.
FSU President Richard McCulloughshared his vision to establish Florida State University as a leader in genomics and genomic medicine. He emphasized the importance of building the healthcare infrastructure necessary to realize this vision and introduced Ashley Cannon, Ph.D., M.S., CGC,the inaugural director of IPRD’s master’s program in genetic counseling. The master’s program will be only the second such program in Florida and anticipates welcoming its first cohort of students in the fall of 2027.
Showcasing Discovery and Engaging Families
A poster session followed the symposium and featured research work supported by IPRD seed grants and collaborations across Florida State University. Projects included studies in pediatric brain tumors, cardiomyopathy and other rare diseases. The session demonstrated the breadth of scientific discovery supported by IPRD and the growing research community dedicated to improving outcomes for rare disease patients.
Following the poster session, IPRD hosted a family lunch and roundtable conversation where rare disease families received direct updates about IPRD’s programs in diagnostics, research and gene therapy development. This dialogue reinforced the institute’s commitment to advancing care in partnership with the families it serves.
A Future Defined by Answers
IPRD remains committed to advancing the frontiers of rare disease research, diagnosis and care. The institute’s mission is to bring families answers faster, accelerate the development of new therapies and build a healthier future for children across Florida and beyond.
Thank you to our sponsors for making this day possible
