Supporting Worriers for the ALS/MND India Community since 2015
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Category Archives: Activities
Conference and workshop on Wilson Disease Genomic Forum 2026
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Held on 11 to 13 of march 2026 @ New Delhi...
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Novo Nordisk India partners with ORDI for Racefor7
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Novo Nordisk India partners with ORDI for Racefor7 Racefor7 promotes awareness, encourages early diagnosis, and calls for improved access to rare disease care across the country News By EH News Bureau On Feb 26, 2026 Novo Nordisk India and the Organization for Rare..
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Race for 7-2026 – Biospectrum -Karnataka Health Minister assures State Rare Diseases Policy soon
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Karnataka Health Minister assures State Rare Diseases Policy soon February 23, 2026 | Monday | News Karnataka Health Minister Dinesh Gundu Rao flags off Racefor7 11th edition The Organization for Rare Diseases India (ORDI), a national patient advocacy organization committed..
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HAE Patients Meeting Held In Bangaluru Under The Leadership of Mrs Pravalika
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On 22nd Feb 2026 attended a HAE Patients meeting in Bengaluru under the leadership of Mrs Pravalika. ..
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My Veiws in Duty exemption on rare disease drugs fails to address affordability crisis, says expert
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The duty exemption addresses import costs but leaves the fundamental affordability challenge unresolved. Families continue to face monthly expenses of tens of thousands of rupees and annual costs running into crores. Sumit Jha Published Feb 02, 2026 | 2:32 PM..
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My Views -Budget cuts import costs of certain cancer & rare disease drugs. Why it offers little relief to patients
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Cancer imposes catastrophic health expenditure in India, with medicines constituting over 60% of out-of-pocket expenditure. Research shows wide price variations, limited cost containment. Sneha Richhariya 01 February, 2026 08:43 pm IST Representational image | Commons New Delhi: Finance Minister Nirmala Sitharaman..
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My veiws -Duty cuts ease imports, rare disease costs remain crushing nationwide
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Duty cuts ease imports, rare disease costs remain crushing nationwide Patient groups say customs exemptions help little without sustained government funding support for rare disease treatment across the country The Union Budget 2026 announced targeted relief for cancer..
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My Budget views in The Hindu -Business Line
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The silent epidemic. ‘Rare diseases aren’t rare, they’re orphaned’ Despite India’s national policy on rare disease treatments, access is marred by delays and exorbitant costs By J Mangaiyarkarasi Updated – January 26, 2026 at 08:37 PM. Ahead of Budget 2026, patient..
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Rare Diseases In India: Why Early Diagnosis Is Still The Biggest Missing Link
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My article Rare Diseases In India: Why Early Diagnosis Is Still The Biggest Missing Link Prasanna Shirol Jan 24, 2026 For millions of Indians with rare diseases, the real crisis isn’t treatment, it’s the years lost before a correct diagnosis..
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Home-based education: Bridging the gap for children with disabilities – Citizen Matters
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( My views and statement in this article) Thirteen-year-old Rohan (name changed), a little shy and very happy, envelops his mother in a spontaneous bear hug as three of his teachers and therapists compliment and tease him playfully. We are at..
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Lysosomal storage disorders symposium – CDFD Hyderabad on 26th Nov 2025
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Centre for DNA Fingerprinting and Diagnostics (CDFD) had organised a LSD Symposium. This was part of their ICMR project on research. I spoke about why LSD research is required in India...
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Received the Invitation to “The New Frontier: Innovation, Regulation, and Access in Cell & Gene Therapy”, this is organized by DBT and BIRAC an industry-academia meet on to advance these recommendations, support collaborative dialogue, address regulatory challenges, and engage all..
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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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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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