Florida takes a major step toward leading rare disease research with new Sunshine Genetics Act funding
Florida – Florida is making strides to become a national hub for rare disease research, thanks to the passage of the Sunshine Genetics Act. Signed into law by Governor Ron DeSantis, the legislation marks a significant turning point in the state’s commitment to improving health outcomes for children affected by rare diseases. With an initial investment of $3 million, the act jumpstarts the Sunshine Genetics Pilot Program, creating new opportunities for scientific breakthroughs in genetics and genomics.
The Sunshine Genetics Act, which received bipartisan support, aims to address the challenges faced by families battling rare diseases. More than 7,000 rare diseases affect over 30 million Americans, and for many families, finding a diagnosis can be a years-long, heart-wrenching process. The Sunshine Genetics Act seeks to change that by providing early detection and targeted treatment for these conditions. The law positions Florida at the forefront of genomic medicine, leveraging cutting-edge technology to deliver better care to children across the state.
The Sunshine Genetics Pilot Program will use the $3 million funding to sequence the full genetic code of newborns at no cost to their families. This pioneering program will be fully operational by July 1, 2025. By identifying potentially treatable conditions early in life, doctors will be able to begin care before symptoms arise, improving long-term health outcomes and minimizing the need for costly hospital visits. The program also promises to give families hope and a sense of control by providing answers early in their child’s life.
“For too many families, a rare disease diagnosis is a journey of heartbreak and uncertainty,” said Representative Adam Anderson, who championed the bill. His son, Andrew, tragically passed away from Tay-Sachs disease, a condition that the Sunshine Genetics Act seeks to address. “The Sunshine Genetics Act is a promise to those families—a promise of hope, early detection, and a future where no child’s life is cut short by a rare disease. Florida is leading the way, and this historic investment will change lives for generations.”
The Florida Institute for Pediatric Rare Diseases, located within the Florida State University (FSU) College of Medicine, is also set to receive $4.5 million in funding as part of the act. This funding will allow the institute to accelerate its research into rare pediatric diseases, bringing together a network of top scientists, researchers, and clinicians to develop new treatments and therapies. The institute, which was launched in 2024 with the advocacy of Rep. Anderson and state funding, focuses on leveraging gene therapy and precision medicine to improve the lives of children suffering from rare genetic conditions.
FSU President Richard McCullough expressed his enthusiasm for the initiative, stating, “Thanks to Representative Anderson’s leadership and the strong support of Governor DeSantis and the Florida Legislature, the Sunshine Genetics Act is now law. Florida State University is proud to be part of this effort. We’re building one of the most forward-thinking medical research environments in the country, and we’re setting the pace by advancing research and supporting families across Florida. This is what we’re all about.”
The Florida Institute for Pediatric Rare Diseases is already making progress in groundbreaking research, and the new funding will help to further propel their efforts. FSU College of Medicine Dean Alma Littles, M.D., spoke to the importance of the legislation, saying, “We thank the Florida Legislature and Governor DeSantis for supporting this legislation establishing the Sunshine Genetics Act, allowing the Florida Institute for Pediatric Rare Diseases to continue its important work. The associated funding enables Florida State University and our College of Medicine to accelerate its pursuit of groundbreaking discoveries, leading to lifesaving treatments and improving the health of children with rare diseases.”
The Sunshine Genetics Act is not just about the research—it’s about creating a ripple effect that will improve the lives of millions of people affected by rare diseases across the nation. The bill establishes the Sunshine Genetics Consortium, a coalition of top researchers, clinicians, and biotech innovators who will collaborate to ensure that the latest advances in genetics are rapidly applied in clinical settings. This collaborative effort is expected to yield new insights into rare diseases, providing families with earlier diagnoses and more effective treatments.
“The Sunshine Genetics Act enables us to do what matters most—deliver real solutions to families who have waited too long for answers,” said Pradeep Bhide, Director of the Florida Institute for Pediatric Rare Diseases. “With support from the state, we will accelerate the development of advanced technologies for precision diagnostics and therapies for children affected by rare genetic diseases. It is deeply rewarding to be part of that mission.”
The Sunshine Genetics Pilot Program’s early detection efforts also promise to benefit healthcare systems by reducing long-term costs. Early intervention is key to improving health outcomes, and by identifying genetic disorders in newborns, doctors can begin treatment before symptoms develop. This proactive approach leads to healthier children, fewer hospitalizations, and a better quality of life for families. In turn, it will ease the financial burden on healthcare providers and reduce the emotional toll on families who often face uncertainty and financial strain while seeking a diagnosis.
Through this ambitious initiative, Florida is establishing itself as a leader in genomic medicine. The Sunshine Genetics Act positions the state to be at the cutting edge of research, with the potential to grow into a $100 billion genomic medicine industry. This is not only an investment in the future of rare disease research, but also a recognition of Florida’s growing role as a center for scientific innovation and medical advancement.
On July 9, 2025, a ceremonial check presentation took place at the FSU College of Medicine, where Rep. Anderson, FSU President McCullough, Director Bhide, and FSU College of Medicine Dean Alma Littles, M.D., were joined by Dorothea Lantz, Director of Community Engagement for the Prader-Willi Syndrome Association. Lantz, whose seven-year-old son suffers from Prader-Willi Syndrome, spoke to the profound impact the Sunshine Genetics Act will have on families dealing with rare diseases.
In addition to the Sunshine Genetics Pilot Program, the funding and support provided to the Florida Institute for Pediatric Rare Diseases will ensure that the state’s research capacity continues to grow. The collaboration between Florida’s top universities, hospitals, and biotech companies will create a vibrant ecosystem for the development of new treatments, therapies, and technologies for rare diseases.
Florida’s leap to the forefront of rare disease research is not just about technological innovation. It’s about hope—hope for families who have long felt the weight of uncertainty as they search for answers to their children’s health challenges. The Sunshine Genetics Act provides that hope by offering families an opportunity to get answers early in their child’s life, ensuring that the road to diagnosis and treatment is no longer a prolonged journey of heartbreak.
With its commitment to advancing genomic medicine and rare disease research, Florida is shaping a future where families facing rare diseases no longer have to navigate the complex healthcare system alone. The Sunshine Genetics Act is a bold step toward creating a future where every child, regardless of the rarity of their condition, has access to the best possible care. This initiative not only promises to change lives in Florida but across the entire nation.
