HDSI ( Huntington Disease Society India) organized 2nd International conference on 23rd and 24th Aug 2025 at NIMHANS Convention Hall in Bengaluru. ORDI was one of the Co organizer along with Department of Health and Family Welfare Karnataka, Movement Disorder..
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It was my hour to be a speaker at National Rare Diseases Conference 2025 Organized by FICCI (Federation of Indian Chambers of Commerce and Industry) in collaboration with NITIAayog and IMPF ( Indian Medical Parliamentarian Forum) highlighting innovation, access, indigenous..
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I was invited as a Panelist on Day 2 of R.I.D.E. 2025 organised by MIT- WPU ( World Peace University) Pune Theme of the panel discission was : Innovation: A need in Every Vertical Other panelist were Mr. anjan biswas..
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ACTRaD 2025, a National Conference focused on advancing Clinical Trials in Rare Diseases was conducted on 25th and 26th July at INSA ( Indian National Science Academy, New Delhi. This was Co Organised by: TIGS (Tata Institute for Genetics and..
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Wheelchair accessibility in India: The struggles of those with rare diseases Individuals affected by rare diseases and their families face challenges that often overlook the need for tailor-made houses and wheelchair access in public spaces across India Written by Sunitha..
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It was a moment of Pride and Hope to visit this new facility at CSIR ( Council of Scientific & Industrial Research) – IGIB ( Institute of Genomics and Integrative Biology). They are being set up for working on a..
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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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