Florida Institute for Pediatric Rare Diseases @FSU
@FSUIPRD
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Our mission is to advance research, education, clinical care, and advocacy for pediatric rare diseases.
Joined April 2024
Missed the big announcement? Revisit the key takeaways from the Sunshine Genetics Act News Conference! 🌞 Visit our website to learn how Florida is revolutionizing newborn genetic screening and pediatric rare disease research: https://t.co/8IbBkepMhE
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Secretary Branham (@MB4FLseniors) visited @FSUCoM Department of Geriatrics and @FSUIPRD to discuss geriatric training and tour a genomics lab using the NovaSeq X—turning rare disease research into real-world treatments helping Floridians live and age well. #FSU #FloridaSeniors
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Enacted in 2025, the Sunshine Genetics Act makes Florida the first state to offer universal whole-genome sequencing as a standard part of newborn care. Read more in @Forbes about this law, championed by @AdamAndersonFL and supported by @FSUIPRD. https://t.co/pkySKGFpde
forbes.com
Many babies enter the world with silent metabolic or genetic conditions. Today, standard newborn screening can check for some of these diseases but whole genome sequencing can see more.
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Florida has made history with the Sunshine Genetics Act championed by @AdamAndersonFL and supported by the Florida Institute for Pediatric Rare Diseases at FSU (@FSUIPRD). This initiative will authorize sequencing for up to 100,000 newborns, helping detect hundreds of genetic
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High intake of artificial sweeteners during middle age leads to accelerated cognitive decline, according to new research in @GreenJournal led by Brazil's @usponline. These findings build upon a 2022 study on aspertame by @FSUNeuroscience and @FSUCoM's Pradeep Bhide.
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The visit highlighted the innovative work underway at IPRD and opened important discussions on how federal partnerships can accelerate our mission to advance genomic medicine and improve outcomes for children with rare diseases.
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On August 26, we were honored to welcome Sam Watters, Policy Advisor in the Office of the Secretary for Health and Human Services (HHS), and Travis Smith, D.O.,Senior Advisor with HHS and HRSA, to the Florida Institute for Pediatric Rare Diseases (IPRD).
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Dr. David Ledbetter who previously led Geisinger’s MyCode program, is helping launch Florida’s Sunshine Genetics Newborn Genetic Screening Pilot Program at IPRD. @FSUCoM @FSUResearch
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IPRD’s own Dr. David H. Ledbetter, PhD, FACMG joins Mendselpod to discuss the future of genomic medicine. 🎧 https://t.co/LM2b0fmbCf
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🚨We’re hiring! Join the Florida IPRD Whole Genome Sequencing Lab. 🧬Technical Supervisor (Job ID: 60980) 🔬Medical Technologist (Job ID: 60978) Lead genomic diagnostics and help improve care for children with rare diseases. 👉Apply today: https://t.co/yAcbBQ0YQG
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The successful implementation of transformative programs like “The Sunshine Genetics Act” would not be possible without the right people. The partnership between USF Health Morsani College of Medicine and Tampa General Hospital truly demonstrates what’s possible at the
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The momentum continues to accelerate at the “Florida Institute for Pediatric Rare Diseases” with 23 ongoing research initiatives across 7 departments and 3 FSU Colleges! I’m so grateful for the tireless dedication of this team! @FSUIPRD @FSUResearch @FSUCoM
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Florida State University’s College of Medicine welcomed 120 future physicians into medical school with its annual White Coat Ceremony on August 8 in Ruby Diamond Concert Hall. Congratulations and welcome to @FSUCOM! 🩺 Read more at https://t.co/X2UBkrQiED
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📣 News from @FSUDEaRLab’s ongoing research on neurofibromatosis type 1 (NF1): Individuals with NF1 show significantly reduced visuospatial and visuomotor abilities compared to those without the condition. 🧠Learn More: https://t.co/xVDpwBsUCi
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FSU Provost Jim Clark and VPR Stacey Patterson visited IPRD for a program update and toured our Genome Sequencing Lab. Together, we are laying the groundwork for breakthroughs in genomic medicine and pediatric rare disease research at @FloridaState. @FSUCoM @FSUResearch
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We’re bringing the right players to the team to win big for Florida families! The time spent with @TGHCares, @USFHealth & @FSUIPRD to discuss the implementation of the Sunshine Genetics newborn screening program was a very productive. The future of medicine is coming to FL!
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Florida surges to the forefront of pediatric rare disease research with boost from the Sunshine Genetics Act. The act, championed by @AdamAndersonFL and signed into law by Gov. Ron DeSantis, establishes a five-year genetic sequencing pilot program for newborns and creates the
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Visit the IPRD Rare Disease Research Program website:
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🎉We are proud to support 3 groundbreaking pediatric rare disease research projects at FSU: ❤️‍🩹 3D-printed VAD for HLHS – Dr. Tristan Driscoll 🧪 Zebrafish models of SNAREopathies – Dr. James Fadool 🗣️📚 SEED scoring for speech disorders – Dr. Kelly Farquharson
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In her new role, Nemec will coordinate and strengthen IPRD’s expanding research portfolio, support the integration of basic and translational science, and help guide institutional growth as we build the nation’s leading center for pediatric rare disease research and innovation.
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