Category Archives: Activities

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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Spreading Global awareness on rare disease through Race for 7

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Article published in “New Karnataka”  on 11th Feb 2021 about ORDI – Race for 7. This 6th edition and is Virtual this year Race for 7 is an annual mass “Awareness Run/Walk/Ride” being organized on “World Rare Disease Day” on  28th February 2021 at 6.30 am. https://registration.racefor7.com/..

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