My Article in Gujarat
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This is the article published in Gujrat and one of the doctors sent us. ..
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Category Archives: Activities
Expert Advisor – Global Patient Meeting
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Attended a “Global Diversity and Clinical Trials Expert Panel Meeting” as a Expert Advisor representing India. This was Organized by Boehringer Ingelheim in Lisbon on 22nd to 24th In Lisbon, Portugal. This was my second Physical meeting. It was informative,..
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Meeting with Mr. Frédéric Oudéa, Global Chairman of the Board of Directors-Sanofi
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I had the opportunity to meet, interact with Mr. Frédéric Oudéa, Global Chairman of the Board of Directors-Sanofi, along with other Board members ay Hyderabad on 10th Sept 2025. Mr Parameshwaran Dr Nishant were present from the India Team I spoke..
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CNBC TV18-Access – Why India’s rare disease crisis demands a collaborative response
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September 1, 2025, 8:35:12 AM IST (Published) CNBC-TV18 Why India’s rare disease crisis demands a collaborative response Given that half of all rare diseases manifest at birth, the argument for a robust, nationwide newborn screening program is undeniable, notes Prasanna..
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HDSI International Meeting at Bengaluru on 23rd and 24th Aug 2025
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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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Speaker at Rare Disease Conference 2025 Organized by FICCI, NITI Ayog and IMPF
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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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Panelist @ MIT-WPU – R.I.D.E. 2025 Pune
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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- National Conference on Advancing Clinical Trials in New Delhi
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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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Happiest health Article – Wheelchair accessibility in India: The struggles of those with rare diseases
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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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Visit to CSIR-IGIB Facility for Cell and Gene Therapy
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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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Glaucoma Advocacy Workshop at IGIB, New Delhi
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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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Speaker @ 2nd CIS Forum of CIS Countries on Orphan Diseases Moscow Russia
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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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Happiest Health – How a father’s love paved the way for pan-India awareness of rare diseases
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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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The Telegraph Online – Scanner on rare disease, usual bottlenecks: Red tape and funds cap hurt patients
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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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Bio Spectrum :About 10-12 orphan drugs are available for patients in India
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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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Deccan Herald Article – SMA- Debilitating and Costly
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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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Corporate Awareness event @Labcorp, Bengaluru Office
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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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Speaker @ ISCR Webinar on Rare Diseases and their impact on the Pediatric Population
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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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Speaker at e Clinical Network
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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 MoreBlog By Dr Sudha Bhattacharya : Applying management principles to Rare Diseases: How a dad navigated his daughter through Pompe Disease and paved the way for many.
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Applying 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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