Our mission is to advance research, education, clinical care, and advocacy for pediatric rare diseases.

Joined April 2024
56 Photos and videos
We recently partnered with the A.J. Anderson Foundation to host our inaugural event, bringing together over 200 families, researchers, and advocates for a transformative Rare Disease Symposium featuring insightful updates on genomic newborn screening and advances in gene therapy.
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We recently partnered with the A.J. Anderson Foundation to host our inaugural event, bringing together over 200 families, researchers, and advocates for a transformative Rare Disease Symposium featuring insightful updates on genomic newborn screening and advances in gene therapy.
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This landmark gathering marked the beginning of a long-term collaboration dedicated to elevating voices, accelerating research, and improving outcomes for children and families affected by rare diseases. View the full coverage of this incredible event: iprd.med.fsu.edu/2026-rare-d…

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2026 Rare Disease Symposium Families truly were the driving force behind powerful conversations on genomic screening and gene therapy, and the future of rare disease care. Researchers, clinicians, industry leaders, and families came together for accelerating progress.
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IPRD hit the road this week and had the privilege of attending the inaugural AJ Anderson Foundation & IPRD Rare Disease Conference. The event brought together researchers, clinicians, industry leaders and families to advance conversations around genomic screening & gene therapy.
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Florida Institute for Pediatric Rare Diseases @FSU retweeted
.@FSUIPRD is teaming up with the A.J. Anderson Foundation to expand access to genetic screening and rare disease care, helping families find answers faster and improving outcomes for children. Read more about their shared mission ➡️ news.fsu.edu/news/health-med…
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🎉 Congratulations to Saanchi Shah on receiving a First Year Assistant Professor (FYAP) Grant from the FSU Council on Research and Creativity (CRC)!
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Shah's new pilot study is expanding access to whole-genome sequencing for children with neurodevelopmental conditions in Tallahassee. Refer a family here: fsu.qualtrics.com/jfe/form/S… @FSUCoM @FSUResearch @FSU_Health

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Our team was proud to represent IPRD at the #ACMG2026 meeting. The meeting provided a valuable forum to engage with colleagues across clinical genetics, research and industry while sharing IPRD’s ongoing efforts to advance genomic medicine in pediatric populations.
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As noted by Senior Associate Director David Ledbetter, “gNBS was the hot topic at this year’s ACMG! We must be on to something here at FSU’s IPRD and Sunshine Genetics!” 🌞 Learn more about Sunshine Genetics: iprd.med.fsu.edu/sunshine-ge…

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⭐ Congratulations to Postdoctoral Research Associate Leanne Duke on being named a 2026 winner of the prestigious Journal of Biological Chemistry/Herbert Tabor Early Career Investigator Award! 🏆
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Her award-winning research focuses on small extracellular vesicles; tiny packages cells use to send messages to one another. 🧬 👉 Learn more about Leanne’s achievement: asbmb.org/asbmb-today/people… @FSUCoM @FSUResearch @FSU_Health
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Florida Institute for Pediatric Rare Diseases @FSU retweeted
Healthcare shouldn't be inaccessible. We're working to change that. By connecting educators, researchers and clinical partners we’re helping reduce barriers to care and improve health outcomes across North Florida. Visit fsuhealth.fsu.edu for more information.
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On Feb. 27, the Florida Institute for Pediatric Rare Diseases (IPRD) convened national leaders in genomics, diagnostics, and academic medicine to spotlight Florida’s growing leadership in precision public health.
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Florida Institute for Pediatric Rare Diseases @FSU retweeted
As the @FSUCoM and the Florida Institute for Pediatric Rare Diseases (@FSUIPRD) recognized Rare Disease Day, reminders of the urgency of their mission were all around the College of Medicine rotunda — the patients and families whose lives can be changed thanks to improved screening and care. Rare Disease Day is a global movement raising awareness for the millions of people with one of more than an estimated 7,000 identified rare diseases. Its goal is to ensure equitable access to diagnosis, treatment, healthcare and social support for those affected. Read more at news.fsu.edu/news/health-med…
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Florida Institute for Pediatric Rare Diseases @FSU retweeted
.@FSUIPRD and @illumina are helping end the diagnostic odyssey for Florida families, speeding up rare disease diagnosis so patients can get the right care sooner. #RareDiseaseDay
Whole-genome sequencing can help end the rare disease diagnostic odyssey for hundreds of millions worldwide. On #RareDiseaseDay, learn how @illumina's technology is helping families in Florida get answers faster. Illumina Laboratory Services (our CLIA-certified lab) is providing whole-genome sequencing and interpretation services to support the new Diagnostic Lab at @FSUIPRD — helping drive innovation in diagnostics and treatments for rare diseases. Learn how clinical genomic sequencing will help families get answers faster 🔗 : bit.ly/4aJMNGo
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Rare Disease Day – Feb. 27 marks the official launch of the FSU IPRD Diagnostic Lab, in partnership with @QuestDX, a global leader in diagnostic services. #RareDiseaseDay #RareDiseaseResearch #FSU #IPRD @FSUCoM @FSU_Health @FSUResearch
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🎤 Join us on Feb. 27 for a conversation on how advances in genomics are transforming healthcare and redefining what’s possible for the rare disease community. 🧬 Learn more about Rare Disease Day: x.com/FSUIPRD/status/2023792… #RareDiseaseDay @FSUCoM @FSU_Health @FSUResearch
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Florida Institute for Pediatric Rare Diseases @FSU retweeted
.@FSUIPRD will host the 2026 Rare Disease Day symposium this Friday at @FSUCoM to highlight advances in genomics, research and clinical care. With guest @AdamAndersonFL and keynote address by @illumina Chief Medical Officer Dr. Eric Green. news.fsu.edu/news/health-med…
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🌍Rare Disease Day 2026 Join us on Friday, February 27 as we highlight how IPRD is advancing research to combat rare diseases impacting 30 million Americans through innovation and collaboration. 🅿️Complimentary parking available in Spirit Way Parking Garage
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