About Saranam Foundation Saranam Foundation currently provides community-based palliative care services through multidisciplinary teams, focusing on improving the quality of life of patients with life-limiting illnesses. Current Engagements Palliative Care Program at Kidwai Memorial Institute of Oncology (Oncology Patients) Recently..
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Organized by Inter University Centre For IPR Studies Cusat..
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“Early detection of genetic diseases can bring down India’s infant mortality rate,” said Prasanna Kumar Shirol, Co-founder & Executive Director of ORDI (Organization for Rare Diseases India)..
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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 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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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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On 22nd Feb 2026 attended a HAE Patients meeting in Bengaluru under the leadership of Mrs Pravalika. ..
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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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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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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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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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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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( 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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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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This is the article published in Gujrat and one of the doctors sent us. ..
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