2025 Rare Disease Day: Leaders from FSU, industry and government unite to advance pediatric rare disease research
Rep. Adam Anderson (R-Palm Harbor) will be joined by Florida State University President Richard McCullough and members of the FSU Board of Trustees on Friday to announce the filing of HB 907, a pivotal bill that will codify the Florida Institute for Pediatric Rare Diseases (IPRD). The legislation also establishes the Sunshine Genetics Pilot Program within the institute, which will be a three-year initiative offering optional additional screening for Florida’s newborns.
This announcement, to be held at the FSU College of Medicine on Rare Disease Day, highlights FSU’s commitment to pediatric rare disease research, treatment and awareness. Rep. Anderson’s leadership was instrumental in creating IPRD — a tribute to his son, Andrew, who passed away from Tay-Sachs Disease in 2019.
Also speaking at the news conference will be Oralea Marquardt, past president of the National Tay-Sachs & Allied Diseases Association (NTSAD). Marquardt became part of the NTSAD community in 2007 after her son, William, was diagnosed with GM1 gangliosidosis, a disease with similar pathology and symptoms to Tay-Sachs disease.
Provost Jim Clark, Vice President for Research Stacey S. Patterson, College of Medicine Dean Dr. Alma Littles and IPRD Director Pradeep Bhide will also be joining Anderson, Marquardt and McCullough at the news conference.
Following the news briefing, a symposium will showcase rare disease research from across FSU departments. The event will include a keynote address from Dr. David H. Ledbetter, the inaugural Associate Director for Precision Medicine at IPRD. By leveraging the expertise of multidisciplinary teams, the institute is driving innovation in medical research and strengthening efforts to combat pediatric rare diseases.
Media representatives are encouraged to attend the event to help shine a light on rare childhood diseases:
FRIDAY, FEB. 28
NEWS CONFERENCE: 9 A.M.
SYMPOSIUM TO FOLLOW
FSU COLLEGE OF MEDICINE
1115 W. CALL ST.
TALLAHASSEE, FL
Follow this link for the full news conference and symposium program.
Parking is available in the Spirit Way Garage on the corner of Stadium Drive and Spirit Way. Media members who are covering the symposium should RSVP to Bill Wellock by 5 p.m. Thursday, Feb. 27.
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