University of Salford (UK), in Collaboration CSIR-Institute of Genomics and Integrative Biology (CSIR-IGIB) and the Organization for Rare Diseases India (ORDI), hosted a national workshop titled “Towards Equitable and Early Genetic Care for Glaucoma” in New Delhi on 30th June..
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It was my honor to receive the invitation to the 2nd CIS Forum of CIS Countries on Orphan Diseases in Moscow, Russia. I had opportunity to present 1) On Rare Disease Policy scenario in India and 2) How BRICS countries..
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Desperate search for a diagnosis Sixteen years on ventilator support Practical application of corporate skills A cruel twist of fate Power of parent support and advocacy groups Fathers as role models. Prasanna Shirol supported his daughter during her 24-year battle..
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ORDI and My reference in the below article: The patients have conditions such as Fabry disease, Gaucher disease or mucopolysaccharidosis — inherited disorders caused by malfunctioning enzymes and seen in one in 20,000 to one in 500,000 births G.S. Mudur Published..
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My article in Bio Spectrum: The Organization for Rare Diseases India (ORDI), a national umbrella organization representing the collective voice of all people with rare diseases in India held the 10th edition of its flagship annual awareness run, RaceFor7. Over..
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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 MoreApplying management principles to Rare Diseases: How a dad navigated his daughter through Pompe Disease and paved the way for many. Sudha Bhattacharya / Mar 2 38 min readNidhi with her parents, Prasanna and Sharada Long before the professional management degree..
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Designing a collaborative care system beyond caretakers Prasanna Shirol—India Feb 27, 2025 4 min read Rare disease patient management must include long-term support for patients and peace of mind for families, ensuring that care continues seamlessly even when parents..
Read MoreThe DICG-NATCO round table meeting held during the World Congress of Nephrology, 2025 explored hitherto less explored complexities of organ transplantation in India, focusing on access, justice, and donor autonomy. It drew insights from successful advocacy efforts in disability rights,..
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This is about :ORDI has written a letter to Prime Minister Mr Modijee and Health Minister Mr Naddajee urging to continue Enzyme Replacement Therapy beyond 50 Laksh fixed under National Policy for 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..
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Met Mr Vinay Sharma, Business Unit Head Astra Zenca along with Mr Madhana Gopal. We discussed Scenario of Rare Disease Market and possible strategies to provide access to Patients in India. Astra Zeneca offers big hope among the industry with..
Read MorePress Coverage about the Gene Therapy and Precession Medicine Conference and I was one of the Speaker...
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