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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Of all cases of rare diseases across the globe, around one-third occur in India. Yet, these diseases—‘rare’ because they affect a relatively small number of people—are hardly given attention in the country. With its resource constraints, India continues to lag..
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Since the diagnosis, on an average, the parents have been spending close to ₹50,000 every month and Palaash has now been advised to undergo surgery that will cost close to ₹20 lakh. Four-year old Palaash was detected with a rare genetic abnormality..
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Since the diagnosis, on an average, the parents have been spending close to ₹50,000 every month and Palaash has now been advised to undergo surgery that will cost close to ₹20 lakh. Four-year old Palaash was detected with a rare genetic abnormality..
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The total amount of donations channelled to the rare diseases portal is Rs 1.18 lakh till date, Bharti Pravin Pawar, minister of state for health and family welfare, told the Lok Sabha on March 25 A government initiative to crowdfund..
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Received CSR Support worth 12 Lakhs Medical Devises ..
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In places like Saharanpur and Buldhana, a rare genetic disease has been taking away control of bodies, lives and livelihoods from entire neighbourhoods. Against all odds, a few scientists and doctors are determined to ease the pain. When I met..
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Conducted a Webinar on the Occasion of International Pompe Day. Dr Priya Kishnani was the key note speaker. Dr Ratna Puri. Dr Neerja Gupta, Dr Parag Thamankar and Dr Ravindra Makkar was other speakers..
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I was a Panelist in Virtual session on “Stakeholder partnerships for rare disease in India- enhancing patient access conducted by OPPI ( Organization of Pharmaceutical Producers of India) Welcome by Ms Nitika Garg, Director Research and policy advocacy, OPPI Setting..
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Opportunity to be speaker along with Dr K Vijay Raghavan – Principal Scientific Advisor to Govt of India and he was also one who inagurated ORDI. This discussion of “Status of Rare Diseases Today” was organized by ORF ( Observer Research..
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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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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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Aimed at raising money for treatment of rare diseases that need expensive and life-long treatment and affect a small percentage of the population News:- 1)Platform launched on August 10; 31 campaigns listed so far that need to raise more than..
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The IGICH will face a serious difficulty from August 2021, the High Court observed on June 18 this year. BENGALURU: In an ongoing case in the Karnataka High Court over the treatment of patients with Lysosomal Storage Diseases (LSDs), it..
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Attended RDI Members Meeting on the Global State of the Art Resource for Rare Diseases (SoA)...
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