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b"After losing his child to a rare congenital disease in 2012, Harsha Rajasimha applied his years of post-doctoral genomics data research experience at National Institutes of Health to develop a technology platform to accelerate clinical research. As the Founder and CEO of Jeeva Informatics and Founder and Chairman of the international humanitarian nonprofit Indo-US Organization for Rare Diseases (IndoUSrare), he's on a mission to bring fresh perspectives and innovation to get faster cures by engaging patients and participants in clinical research.\\n\\nEPISODE HIGHLIGHTS\\nHow did you become involved in the rare disease community?\\nI was a genomics data scientist, going through my day-to-day life at the National Institute of Health at the Cancer Institute and the Eye Institute. By 2010, I had published over 15 articles and was enjoying my job. In 2012 we had a child born with a rare congenital disease, Edward Syndrome and the baby wasn't viable at birth. That opened my eyes to the other side of the coin. Up to this point, research was all on the data side, but I wasn't as empathetic or aware of what happens to the patients and families going through rare genetic disease experiences. That led me to social entrepreneurship and I decided to apply my years of post-doctoral research experience to accelerating clinical research, faster diagnostics and therapies for rare diseases.\\xa0\\nHow did you know you wanted to do something more meaningful with your experience?\\nIt took several months of grieving, soul searching and going over what went wrong. I did basic research about what happens in the rare disease community in the US and learned about NORD and Global Genes. What struck me was that I couldn't find any policy framework, definition of rare disease or organization to advocate for rare disease in India. It became clear that it was an obvious place to start. In February 2013 I visited the Bangalore India Bio Conference and met a number of key stakeholders there to pull together like-minded individuals and form a non-profit which became the Organization for Rare Diseases India. The diagnosis and treatments of rare diseases were happening in India, but there wasn't an organized or national effort happening.\\xa0\\nWhat is the mission of the Organization for Rare Diseases India and how does it connect with bringing the culture of the rare disease community in India to the US?\\nHow is Indo-US Organization for Rare Diseases connected to Jeeva Informatics?\\nWhat's the patient related role of Jeeva through the clinical trial process?\\nHow can parents and small advocacy groups engage with you and connect in some way?\\n\\nLINKS AND RESOURCES MENTIONED\\nONCE UPON A GENE - EFFISODE 015 - Show Your Stripes\\n https://effieparks.com/podcast/effisode-015-show-your-stripes\\nIndo-US Organization for Rare Diseases\\nhttps://indousrare.org/\\nJeeva Informatics\\nhttps://jeevatrials.com/\\nIndo-US Organization Patient Alliance\\nhttps://indousrare.org/program-info\\nOrganization for Rare Diseases India\\nhttps://ordindia.in/\\nFind Clinical Trials\\nhttps://clinicaltrials.gov/\\nGlobal Genes\\nhttps://globalgenes.org/\\nNORD\\xa0\\nhttps://rarediseases.org/\\nOnce Upon A Gene TV on The Disorder Channel\\nhttps://www.thedisordercollection.com/\\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/\\nLeave a voicemail\\nhttps://effieparks.com/speakpipe"