ORDI – Race For 7 – 2022 – Voices From Parents And Patients – 01
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Category Archives: Gallery
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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An appeal for Orphan Drug Policy and National Policy for Rare Diseases
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Appealed to Dr Ashwathnarayan C. N., Honorable Minister for IT BT and ST – Govt of Karnataka, for implementing “Orphan Drug Policy” for the state of Karnataka and “National Policy for Rare Diseases” in the state on 5th Aug 2022..
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‘Brainstorming for Rare Diseases in India’
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I Participated in a meeting of the Patient Advocacy groups for Rare Diseases regarding the ‘Brainstorming for Rare Diseases in India’ which was scheduled under the Chairpersonship of Dr. Swasticharan L., Addl. DDG & Director EMR on 31st January 2022 at 03:00pm. He Represented the ORDI..
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Early Screening or Detection Makes Metabolic Disorders In Babies Manageable: Experts
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Inborn error of metabolism (IEM) is a spectrum of diseases that can affect the normal metabolism in children, said doctors. Screening of newborns or screening of parents during the pre-natal period can help detect inborn metabolic disorders in children that..
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India Rare Disease Summit 20th October 2021
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Link For The Video:- https://event.on24.com/eventRegistration/console/EventConsoleApollo.jsp?simulive=y&eventid=3478701&sessionid=1&username=&partnerref=&format=fhvideo1&mobile=&flashsupportedmobiledevice=&helpcenter=&key=BB122263B173CC975B112526A3A02945&source=VC-2303987&newConsole=true&nxChe=true&newTabCon=true&consoleEarEventConsole=false&text_language_id=en&playerwidth=748&playerheight=526&eventuserid=484161919&contenttype=A&mediametricsessionid=419715217&mediametricid=4883121&usercd=484161919&mode=launch..
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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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