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Redefining Rare Disease Care In The Digital Age Insights And Key

Leo Migdal
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redefining rare disease care in the digital age insights and key

At the Stanford-UCB Rare Disease Digital Health Symposium held in Stanford, California, on September 8, 2023, researchers, clinicians, payers, thought leaders, and rare disease caregivers and advocates discussed the current state of care delivery... Digital health aims to improve healthcare delivery through novel ways of providing access to more precise diagnosis, monitoring of disease progression, treatment, prognosis, and care management for rare disease patients. The meeting focused on highlighting challenges and unmet needs, data infrastructure and analytics, the need for targeted and effective personalized therapies, and the importance of digital care transformation. The meeting also covered the social and ethical impact of access to digitally delivered, patient-centered care, as well as views on implementation and patient autonomy and empowerment. Keywords: Digital health; Health technology; Patient-centered care; Precision medicine; Rare disease; Remote patient monitoring. © 2024 The Author(s).

Published by S. Karger AG, Basel. The authors have no conflicts of interest to declare. In the world of rare genetic diseases, early diagnosis is often the key to better patient outcomes. However, the diagnostic journey can be long and complex, sometimes taking years before a definitive answer is found. Dr.

Bruno Bordest, a Brazilian geneticist who teaches at the Universidade Federal de Mato Grosso, has been working to bridge […] Analyzing facial features has long been a vital step in diagnosing genetic syndromes. In recent years, AI-driven technologies have transformed this process, making it more efficient and accurate. Leading this innovation is Face2Gene, an advanced AI platform that leverages machine learning to assist clinicians in identifying genetic disorders. To explore the development of this groundbreaking […] After years of searching for answers, Miguel finally had his Pitt-Hopkins Syndrome diagnosis confirmed – and FDNA’s AI technology was the key to this discovery.

When Evelyn discovered she was pregnant with Miguel in 2016, it felt like the beginning of a beautiful chapter. As a dedicated biologist and Ph.D. candidate, her life revolved around […] Insights from our rare disease digital health symposium at Stanford University last fall. We had great discussions take place on the digital transformation of care delivery in rare. There is so much work to do.

Thanks for your collaboration Ron Li and Anuradha Dayal, MD, FAAP, John Lugo, Danielle Kuryshev, and Tiffany Murray. And thanks to all of our speakers, Russ Altman, Kimberly Moran, PhD, MBA, Daniel Kraft, MD, Eleni Linos, David Bergman, Danielle Hamel, Benjamin Vandendriessche, Nasha Fitter, Justin West, MD, Charles Fisher, Onno Faber, Indu... Michael Graglia, Christopher Sharp, Isil Arican, MD, MS-HCA, Effie Parks, Rob Sederman, J. Marc Overhage, Nancy Freeman Buhr, Stefanie Eichner, Corina Provencher, and Dr. Jon Bernstein. Also, thanks to Karger Publishers.

https://lnkd.in/dF7kCtPY Thank you for the opportunity to bring the patient perspective and share about #SYNGAP1 on behalf of the SynGAP Research Fund (SRF). Fabulous job, Emily. Thank you for including the rare disease caregiver voice. This is excellent, Emily! Congratulations!

At the Stanford-UCB Rare Disease Digital Health Symposium, Stefanie Eichner of FDNA presented groundbreaking advancements in rare disease diagnostics, spotlighting FDNA’s new and innovative Child Development Checker app. The AI-powered app helps parents in the diagnostic journey concerning developmental disabilities and rare diseases. A big Thank You to the organizers at UCB and Stanford University for providing this invaluable platform, and to Emily Lewis, MS, CCRP, CHES for succinctly capturing the transformative innovations presented that day in... #aihealthcare

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At the Stanford-UCB Rare Disease Digital Health Symposium held in Stanford, California, on September 8, 2023, researchers, clinicians, payers, thought leaders, and rare disease caregivers and advocates discussed the current state of care delivery... Digital health aims to improve healthcare delivery through novel ways of providing access to more precise diagnosis, monitoring of disease progression...

Published By S. Karger AG, Basel. The Authors Have No

Published by S. Karger AG, Basel. The authors have no conflicts of interest to declare. In the world of rare genetic diseases, early diagnosis is often the key to better patient outcomes. However, the diagnostic journey can be long and complex, sometimes taking years before a definitive answer is found. Dr.

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When Evelyn Discovered She Was Pregnant With Miguel In 2016,

When Evelyn discovered she was pregnant with Miguel in 2016, it felt like the beginning of a beautiful chapter. As a dedicated biologist and Ph.D. candidate, her life revolved around […] Insights from our rare disease digital health symposium at Stanford University last fall. We had great discussions take place on the digital transformation of care delivery in rare. There is so much work to do.

Thanks For Your Collaboration Ron Li And Anuradha Dayal, MD,

Thanks for your collaboration Ron Li and Anuradha Dayal, MD, FAAP, John Lugo, Danielle Kuryshev, and Tiffany Murray. And thanks to all of our speakers, Russ Altman, Kimberly Moran, PhD, MBA, Daniel Kraft, MD, Eleni Linos, David Bergman, Danielle Hamel, Benjamin Vandendriessche, Nasha Fitter, Justin West, MD, Charles Fisher, Onno Faber, Indu... Michael Graglia, Christopher Sharp, Isil Arican, MD, M...