Free Seminar on Puberty in Angelman Kids
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Category Archives: Video Gallery
Interview with Snigdha
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Prasanna Shirol currently serves as the Co-founder & Executive Director of ORDI (Organization for Rare Diseases India), an Umbrella organization that represents 7000+ diseases in India. He has been instrumental in national-level advocacy for Rare Disorders for the past 11..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 02
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Link for original video : https://youtu.be/d5n5RQwYH8s..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 03
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Link for original Video : https://youtu.be/NegGxkxFZB8..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 04
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Link for original Video : https://youtu.be/rCTjJ7o4o2w..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 05
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Link for original video : https://youtu.be/vPRsxJ9X-v0..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 06
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Link for Original Video : https://youtu.be/-qgtv7o-cdg..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 07
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Link for original video : https://youtu.be/mgDxW7udB5U..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 08
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Link for original video : https://youtu.be/NbWBTqJ5B5A..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 09
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Link for original video : https://youtu.be/81MNTzLYWgg..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 10
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Link for original video : https://youtu.be/Qk6nLRMNBZM..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 11
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Link for original Video : https://youtu.be/FEZ3mLcE5m4..
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ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 12
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Link for original Video : https://youtu.be/FG4bEpfo9fk..
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Two Different Lives, Two different stories One Rare Disease
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With little support from the government, a faulty gene puts families with #Rarediseases in India, in a never-ending odyssey! Meet the Pompe Warriors, 2 Different Lives, and their unique stories. They chose to thrive with passion, love, and hope besides..
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My Interveiw on NewsX A-List on being selected as India’s A-List for excellance in Health Advocacy by News X India Channel.
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https://www.youtube.com/watch?v=KnZiSIhQGlE&feature=youtu.be My Interveiw on NewsX A-List on being selected as India’s A-List for excellance in Health Advocacy by News X India Channel. https://twitter.com/NewsX/status/1361567000779104260 https://lnkd.in/gKtU-WZ https://www.facebook.com/Newsxonline/posts/10158441850417763 #advocacy #raredisease #rarediseasewarrior #policy #patients #geneticsmatter..
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The Burden of Rare Diseases
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Over 70 million Indians suffer from rare diseases, the treatment cost of which runs into tens of lakhs every year, lifelong. Yet we don’t have a national policy to support patients such as Dhruti P from Mysuru...
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