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Florida is set to emerge as a national leader in pediatric rare disease research as Gov. Ron DeSantis endorses HB 907, the Sunshine Genetics Act. This legislation initiates the Sunshine Genetics Pilot Program with $3 million, establishes the Florida Institute for Pediatric Rare Diseases at the College of Medicine of Florida State University, and paves the way for a new $100 billion genomic medicine sector in Florida.

Aside from the pilot program funding, the Florida Institute for Pediatric Rare Diseases at Florida State University will gain an extra $4.5 million to enhance research efforts. This funding will empower the institute to spearhead innovative treatments and shorten the previously extensive quest for a diagnosis faced by families dealing with over 7,000 rare diseases impacting 30 million Americans.

Exemplifying FSU’s commitment to this initiative, President Richard McCullough allocated $2 million from the university’s budget to bolster the Sunshine Genetics Pilot Program.

The Sunshine Genetics Act, supported by Rep. Adam Anderson (R-Palm Harbor), creates a five-year genetic sequencing pilot program for newborns and establishes the Sunshine Genetics Consortium, bringing together Florida’s premier researchers, clinicians, and biotech innovators. Starting July 1, 2025, the law positions Florida at the leading edge of genomic medicine, utilizing advanced science to transform lives.

Families participating in the pilot program can choose to have their infant’s complete genetic code sequenced free of charge. The aim is to detect potentially serious yet treatable conditions early, enabling doctors to commence care before symptoms manifest. Early intervention can lead to enhanced health, reduced hospital visits, and a better quality of life for patients.

“For countless families, a diagnosis of a rare disease is a path filled with heartache and doubt,” stated Rep. Anderson, whose son Andrew lost his battle with Tay-Sachs disease. “The Sunshine Genetics Act offers a promise to those families — a promise of hope, early intervention, and a future where no child’s life is cut short by a rare disease. Florida is setting the standard, and this groundbreaking investment will impact lives for generations.”

The Florida Institute for Pediatric Rare Diseases at Florida State University, initiated in 2024 with Anderson’s advocacy and previous state funding, will drive interdisciplinary research, utilizing gene therapy and precision medicine to enhance outcomes for the 15 million U.S. children affected by rare diseases. A ceremonial check presentation occurred on July 9, 2025, at the FSU College of Medicine, attended by Anderson alongside FSU President Richard McCullough, institute Director Pradeep Bhide, FSU College of Medicine Dean Alma Littles, M.D., and Dorothea Lantz, Director of Community Engagement for the Prader-Willi Syndrome Association and mother to a seven-year-old with Prader-Willi Syndrome.

Florida State University leadership extended gratitude to Gov. DeSantis, Rep. Anderson, and the Florida Legislature for their backing in establishing the institute, which will positively affect the lives of Floridians and children nationwide.

FSU President Richard McCullough:
“Owing to Representative Anderson’s leadership and the robust support of Governor DeSantis and the Florida Legislature, the Sunshine Genetics Act is now law. Florida State University is honored to be part of this initiative. We are establishing one of the most progressive medical research environments in the nation, and we are leading the charge by pushing research and supporting families throughout Florida. This is our mission.”

FSU College of Medicine Dean Alma Littles, M.D.:
“We express our appreciation to the Florida Legislature and Governor DeSantis for endorsing this legislation that brings the Sunshine Genetics Act into existence, enabling the Florida Institute for Pediatric Rare Diseases to continue its essential work. The related funding empowers Florida State University and our College of Medicine to expedite its pursuit of revolutionary discoveries, leading to lifesaving treatments and enhancing the health of children with rare diseases. We are dedicated to fostering collaborative opportunities with our Florida medical school colleagues, hospitals, industry partners, and others to further the mission of IPRD.”

Director of the Florida Institute for Pediatric Rare Diseases Pradeep Bhide:
“At the Florida Institute for Pediatric Rare Diseases, our mission is to bring the latest scientific advancements directly to the patients and families who require them most. With backing from the state, we aim to hasten the development of cutting-edge technologies for precision diagnostics and treatments for children impacted by rare genetic disorders. The Sunshine Genetics Act allows us to achieve what is most important — providing genuine solutions to families that have awaited answers too long. It is tremendously fulfilling to be part of that mission.”

Through this monumental investment, Florida is not just promoting essential and lifesaving science — it is building a legacy of hope, innovation, and empathy for families nationwide.

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