My Statement : Prasanna Kumar Shirol, founder of the Organization for Rare Diseases India (ORDI), said that although the government had the National Policy for Rare Diseases, 2021, its assistance was limited to the one-time payment of Rs 50 lakh..
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On 12th May 2025 ORDI conducted “Rare Diseases Awareness” program at LabCorp Office at Bengaluru. This was attended by employees both physical and online. I spoke about how ORDI supports Rare Disease patients and how individual and company can support..
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It was my privilege to be a speaker at webinar organized by ISCR ( Indian Council for Clinical research) on “Rare Diseases and their impact on the Pediatric Population” on 11th April 2025. Other Speaker Were: 1) Dr Ratna Du..
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I was a Speaker at e Clinical Network organised by I23 Consulting. I spoke about advantages and disadvantages of e clinical trails in Indian context with special reference top Rare Diseases...
Read MoreBeyond tax exemptions: Rare disease patients await comprehensive policy support While the Union Budget’s customs duty exemption for 36 life-saving drugs offers some relief, patients and advocacy groups say deeper challenges in rare disease treatment remain unaddressed, from exorbitant costs..
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Attended APARDO ( Asia Pacific Association for Rare Diseases Meeting in Manila – Philippines from 23rd to 24 the Nov 24. ..
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My self and Mr Madhan had an opportunity to Meet Dr Jan Klatt, Senior Vice President – Head of Development of Unit Neurology & Immunology- Germany Mr Ter Yow Wei , A/Director , Clinical Site Lead, SEA, India and HK..
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It was my privilege to be among 60 members from 6 continents to attend and represent India at COLLABORATE initiative at Prague Czech Republic The first-of-its-kind multistakeholder initiative aimed to understand the challenges faced by people with #adult-onset rarediseases and..
Read MoreIt was my privilage to be a Speaker at the 6th CII Pharma and Life Sciences in New Delhi..
Read MorePress Coverage about the Gene Therapy and Precession Medicine Conference and I was one of the Speaker...
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Faculty at Gene Therapy & Precision Medicine Conference- Bengaluru on 21st and 22nd September 2024 organized by GROW Research Laboratory -Narayana Nethralaya Bengaluru, Centre for Genetics & Gene Therapy and Narayana Nethralaya Foundation. The Conference was Inaugurated by Honourable Chief Justice of..
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I was Speaker at Patient Centric Summit ( GPP Charter ) – Dubai, Organised by Boehringer Ingelheim. Spoke on Framework to Support POs (Patient Organizations) and HCPs ( Health Care Professionals) in GPP ( Generalized Pustular Psoriasis) Management. A Rare..
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My statement on the occasion: “The burden of care remains not just for a day. With genetic disease they think about how to manage month on month for years. Some loose hope in the process, there are suicide attempts, divorces,..
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We at ORDI inaugurated ARK (Alliance for Rare KIDneys) to Support Patients Suffering from Rare Kidney Diseases on 13th September 2024, Rare kidney diseases include more than 150 rare disorders, generally characterized by low prevalence and often with multifactorial causation;..
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Attended Global Clinical Trial Experts Panel Meeting on Diversity in Clinical Trials at Amsterdam organised by Boehringer Ingelheim from 2nd to 4th September 24...
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Ahobilam is a town in Nandyal District of Andhra Pradesh. It is surrounded by beautiful hills of the Eastern Ghats. It is the centre of worship of Lord Narasimha , The lion headed avatar of Vishnu to whom the 9 temples are dedicated...
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I was a speaker at the webinar organised by Dr Shroff’s Charity Eye Hospital, Delhi. ..
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