Representative Adam Anderson (R-Palm Harbor) will be accompanied by Florida State University President Richard McCullough and members of the FSU Board of Trustees this Friday to announce the introduction of HB 907, a significant piece of legislation that will establish the Florida Institute for Pediatric Rare Diseases (IPRD). This bill also creates the Sunshine Genetics Pilot Program within the institute, a three-year project designed to provide optional additional screening for newborns in Florida.

This revelation, taking place at the FSU College of Medicine on Rare Disease Day, underscores FSU’s dedication to research, treatment, and awareness concerning pediatric rare diseases. The leadership of Rep. Anderson played a vital role in the establishment of IPRD — a heartfelt homage to his son, Andrew, who lost his life to Tay-Sachs Disease in 2019.

Oralea Marquardt, the former president of the National Tay-Sachs & Allied Diseases Association (NTSAD), will also address attendees during the press conference. Marquardt became actively involved with the NTSAD community in 2007 after her son, William, was diagnosed with GM1 gangliosidosis, which shares similar pathology and symptoms with Tay-Sachs disease.

Joining Anderson, Marquardt, and McCullough at the news conference will be Provost Jim Clark, Vice President for Research Stacey S. Patterson, Dean of the College of Medicine Dr. Alma Littles, and IPRD Director Pradeep Bhide.

Immediately following the news briefing, a symposium will be held to display rare disease research from various FSU departments. The gathering will feature a keynote speech from Dr. David H. Ledbetter, the first Associate Director for Precision Medicine at IPRD. By harnessing the knowledge of interdisciplinary teams, the institute is fostering innovation in medical research and enhancing its initiatives to address pediatric rare diseases.

Media personnel are encouraged to participate in this event to help bring attention to rare childhood illnesses:

FRIDAY, FEB. 28 

NEWS CONFERENCE: 9 A.M.

SYMPOSIUM TO FOLLOW 

FSU COLLEGE OF MEDICINE 

1115 W. CALL ST. 

TALLAHASSEE, FL 

Follow this link to access the complete news conference and symposium agenda.

Parking is accessible at the Spirit Way Garage located at the intersection of Stadium Drive and Spirit Way. Media representatives covering the symposium should RSVP to Bill Wellock by 5 p.m. on Thursday, Feb. 27.

The article 2025 Rare Disease Day: Leaders from FSU, industry and government unite to advance pediatric rare disease research first appeared on Florida State University News.