#InternationalPompeDay: Pompe Foundation presents a captivating session on “Pompe: A rare disease” #InternationalPompeDay: Pompe Foundation presents a captivating session on “Pompe: A rare disease” Published 18:20 pm IST on April 17, 2021 By Our Correspondent Pompe Day panel On International..
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My Quote ( Google Translated ) Speaking to the BBC, Prasanna Kumar Shirol, co-founder and executive director of Bengaluru-based Organization for Rare Diseases India (ORDI) said: “The recently announced policy has announced duty reduction. Which is a good thing. But overall,..
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ORDI sees NPRD 2021 lacks focus on ailing patient affordability calls to rely on crowd funding Our Bureau, Bengaluru Wednesday, April 7, 2021, 12:30 Hrs [IST] Organization for Rare Diseases India (ORDI) strongly believes that there are many things that are..
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Rare disease policy a mockery of right to health, says Bengaluru advocacy group “The NPRD, 2021, is a mockery of the right to health each person in India enjoys. The lack of foresight shines through the cold and thoughtless draft,”..
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As per Organization for Rare Diseases India (ORDI), the National Policy for Rare Diseases, 2021 abridges the ‘right to health’ by ignoring the true needs of rare disease community in India File photo: Children suffering from rare diseases at an..
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The Delhi High Court ordered the Centre to finalise and notify the National Health Policy for Rare Diseases by March 31 Rare diseases, as the name suggest, are those diseases which affect a small proportion of the population; but when..
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I was a panalist in “Rare Disease Day-2021” Online “CME” Organised by Govt Medical Collge – Kozhikode ( department of Pediatrics) CSIR Institute of Genomics and Intigrative Biology – delhi Indian Academy of Pediatrics – Kozhikode Branch..
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Attended the UDNI Patient Engagement Meeting, planning how to bring more of the patients’ perspective into UDNI. ..
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Rare Disease is any disease that affects a very less percentage of a population. Many rare diseases are serious, chronic, and progressive in nature while most rare diseases children do not get to see their 5th birthday. Although an estimated..
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What price a child’s life? India’s quest to make rare disease drugs affordable Parents whose only hope was finding foreign sponsorship or a clinical trial are now looking for homegrown breakthroughs Priti Salian Mon 15 Mar 2021 06.45 GMTLast modified on Mon 15..
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Fortunate to get invitation from @SriSri for An evening with Gurudev to celebrate 40 years of service to #Humanity. Feeling happy to be part of achievers in various field. Thanks to@ORDIndiafor this opportunity Invitation for the Event -An Evening..
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Episode Description In this episode of the Lead, Prasanna Shirol from the Lysosomal Storage Disorder Support Society India talks about helping those affected by rare diseases. Ahmed Shariff: Hi and welcome to another episode of the Lead by DH Radio...
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My photo was featured in an Opinion written by Avantika Shrivastava in “The Logical Indian” 8 March 2021 Opinion: India Needs Policy To Ensure Funding, Patient-Friendly Diagnosis To Curb ‘Rare Diseases’ Rare diseases are called so because they occur in..
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click below Link: http://www.pharmabiz.com/NewsDetails.aspx?aid=135938&sid=1 Nandita Vijay, Bengaluru Saturday, March 6, 2021, 08:00 Hrs [IST] The Organisation of Rare Diseases of India (ORDI) has urged the Union government to increase the Rastriya Arogya Nidhi (RAN) grant of Rs. 15 lakh and allocate..
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