It was a memorable day for ORDI -Racefor 7 and for me to get Mr Narain Karthikeyan – First Formula One driver from India to flag off in Coimbatore in Tamilnadu. This event was conducted in PSG Hospital ground. With..
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It took seven years for one patient to be correctly diagnosed with Pompe disease. This disease needs enzyme replacement therapy (ERT), which can cost up to Rs 1 crore per person per year. This was beyond the means of the..
Read MoreThis Father’s PIL Could Change The World For Indians Suffering From Rare Diseases What’s also important to note is that these rare diseases are country specific. For instance, malaria is not considered a rare disease in India, but it is..
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Article about India’s First Neuro Muscular Clinic jointly ORDI & Baptist Hospital Bengaluru. My Quote 1) “There are 7000 Rare DIseases and Majority of the cases we have observed are Nerve and Muscle” 2) We are filing a PIL, There..
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Link for article :https://health.economictimes.indiatimes.com/news/industry/challenges-and-opportunities-for-rare-diseases-in-india-prasanna-kumar-b-shirol/63664280..
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My heart always beats for these lovely children and I cannot rest until. I see a a day when there is no Undignosed case in India and every one get the treatment for all treatable diseases. During launch of “I..
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Racefor7-2018 coverage by Digvijaya TV..
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ORDI- Race For 7: a run that will change lives ..
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This video compiled by Mr Savr Kumar ..
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Karnataka Patients delegation visit to Meet Health secretory for treatment. ..
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” In Rare and Most genetic Diseases, The cost of treatment is very high, The patient has to undergo treatment through supportive care. My Media Statement on Court order on Insurance coverage for Genetic Diseases..
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Meeting Mr Shahid Akhter Deputy Editor, Economic Times Online Healthcare during my interview in Bengaluru..
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I was a Speaker at “12th Annual ICORD Conference 6th China Rare Disease Summit” representing ORDI and Indian Rare Disease community. This was organized by International Conference on Rare Diseases and Orphan Drug, Chinese Organization for Rare Disorders , Peking..
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Long Wait for Rare Disorder Patients IIJNM Bangalore Published on 5 Sep 2017..
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In an interview with ETHealthworld, Prasanna Shirol, Co- Founder and Executive Director, Organization for Rare Disease India, Bengaluru, talks about the bottlenecks that still exist even after the formation of rare disease policy...
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At First RDCCC Rare Disease Care co ordination center at Indira Gandhi Institue of Child Health Bengaluru First exclusive Day care center for Rare DIsease in India...
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Race for 7 Media Release- My Quote “Rare diseases are not really as rare as we think there are. It is estimated that there are 70 million rare disease patients in India and one out of every twenty Indians suffer..
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