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b"Ciitizen - Take Control of Your Own Medical Records and Advance Research with Nasha Fitter\\nNasha Fitter is the mother of three daughters, one of which was diagnosed with a rare disease called FOXG1. After her daughter's diagnosis, she got to work and co-founded the FOXG1 Research Foundation. She's dedicated to leading the research strategy and finding a cure for every child in the world with FOXG1 syndrome. She's here to talk to us about her work as the Director of the Rare and Neurological Disease Division for Ciitizen, a technology company that enables fast and seamless access to patient data. In this episode, you'll learn about the most innovative medical record platform that will be open and accessible to parents, caregivers, clinicians, academics, bio pharma and researchers. Their goal is to eliminate the slow, manual and expensive processes that are currently used to collect data.\\xa0\\nEPISODE HIGHLIGHTS\\nTell us about you, your family and how you came to be a part of the rare disease community.\\xa0\\nTell us about Ciitizen and your role there.\\nHow do you get started if you want to have medical records digitized?\\nCan doctors, geneticists and scientists access the platform and perform their own search?\\nIf all these medical records are in this database, how do we protect our privacy?\\nHow can parents and caregivers help move this platform forward?\\nWhat is a natural history study?\\nWhat final thoughts do you have for parents and caregivers?\\n\\nLINKS AND RESOURCES MENTIONED\\nWhat is FOXG1 Syndrome? https://foxg1research.org/foxg1syndrome\\nCiitizen\\nhttps://www.ciitizen.com/\\n EPISODE 041 - Time is Brain: SYNGAP Research Fund with Mike Graglia\\n https://effieparks.com/podcast/episode-41-syngap-research-fund\\nThe Patient Record Scorecard\\nhttps://www.ciitizen.com/scorecard/\\n EPISODE 043 - David Fajgenbaum - Chasing My Cure - A Doctor's Race to Turn Hope into Action\\n https://effieparks.com/podcast/episode-43-david-fajgenbaum\\n\\nCONTACT NASHA FITTER\\nnasha@ciitizen.com\\nnasha@foxg1research.org\\n\\nTUNE INTO THE ONCE UPON A GENE PODCAST\\nSpotify\\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\\n Apple Podcasts\\n https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\\nStitcher\\nhttps://www.stitcher.com/podcast/once-upon-a-gene\\nOvercast\\n https://overcast.fm/itunes1485249347/once-upon-a-gene\\n\\nCONNECT WITH EFFIE PARKS\\nWebsite\\nhttps://effieparks.com/\\nTwitter\\nhttps://twitter.com/OnceUponAGene\\nInstagram\\n https://www.instagram.com/onceuponagene.podcast/?hl=en\\nBuilt Ford Tough Facebook Group\\nhttps://www.facebook.com/groups/1877643259173346/"