Category Archives: Activities

24 Hours of Rare

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I was a Panalist in the  24 Hours of Rare- Virtual Event 24 Hours of Rare is the only virtual event that celebrates the global rare disease community with content programmed by the rare disease community. Brief about the programme..

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Racefor7: Over 4000 participants virtually unite to raise awareness for rare diseases By BioVoice News Desk – March 1, 2021 In the backdrop of 70 million rare disease patients in India, Organization for Rare Diseases India (ORDI) through the event hopes to..

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4,000 run for rare disease awareness in 200 cities

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4,000 run for rare disease awareness in 200 cities The event was held virtually, uniting over 4,000 participants from 200 cities across the country, to raise their voices for the rare disease community. Published: 01st March 2021 02:14 AM  |   Last Updated: 01st..

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Father-turned-advocate has founded multiple organizations to support families and search for better therapies for people with rare lysosomal storage disorder

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Click Below https://www.asbmb.org/asbmb-today/people/022521/raising-awareness-and-funding-for-pompe-disease Like most new parents, Prasanna and Sharada Shirol were over the moon when their daughter Nidhi was born in 1999. Their firstborn and ultimately only child, Nidhi was the center of their attention. But they soon grew..

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Race to raise awareness on rare diseases News Today

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Click below link: https://www.nyoooz.com/news/chennai/1554708/race-to-raise-awareness-on-rare-diseases-news-today/ Race to raise awareness on rare diseases News Today | Thursday | 25th February, 2021      Chennai: In the backdrop of Rare Disease Day 2021 Organisation for Rare Diseases India (ORDI) a not for profit organisation..

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Click below link: Race to raise awareness on rare diseases..

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A virtual event in namma Bengaluru to raise awareness and destigmatise rare diseases in India

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Click below link: https://timesofindia.indiatimes.com/entertainment/events/bangalore/a-virtual-event-in-namma-bengaluru-to-raise-awareness-and-destigmatise-rare-diseases-in-india/articleshow/81193039.cms A virtual event in namma Bengaluru to raise awareness and destigmatise rare diseases in India In the backdrop of Rare Disease Day 2021, Organisation for Rare Diseases India (ORDI) a not for profit organization representing the collective voice of all..

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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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#16/2, Sri Krishna Krupa, 19th Cross,
8th Main, kashimutt Road, Malleshwaram,
Bengaluru – 560055, Karnataka, India.

 

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Phone: +91 9980133300
E-mail: prasannashirol@gmail.com

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