Pompe: A Rare Disease – Live discussion on News X on International Pompe Day
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Read MoreORDI 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..
Read MoreRare 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,”..
Read MoreAs 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..
Read MoreThe 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..
Read MoreI 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..
Read MoreAttended the UDNI Patient Engagement Meeting, planning how to bring more of the patients’ perspective into UDNI. ..
Read MoreRare 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..
Read MoreWhat 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..
Read MoreFortunate 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..
Read MoreEpisode 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...
Read MoreMy 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..
Read Moreclick 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..
Read MoreNandita 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 dedicated funds to the..
Read MoreI was a Panalist in the 24 Hours of Rare- Virtual Event 24 Hours of Rare is the only virtual event that celebrates the global rare disease community with content programmed by the rare disease community. Brief about the programme..
Read More#LIFESTYLE#DISEASES#WELLNESS#MEDICINE Rare disease hero: Indian dad whose daughter suffers from Pompe has done wonders for similar kids across the country MARCH 04, 2021PUBLISHED AT 7:34 AMByPRITI SALIANSOUTH CHINA MORNING POST Prassana Shirol (left), his wife Sharadha and their daughter Nidhi (centre)...
Read MoreLifestyle / Health & Wellness Rare disease hero: Indian dad whose daughter suffers from Pompe has done wonders for similar kids across the country Priti Salian Published: 10:30am, 3 Mar, 2021 Prasanna Shirol used his experience accompanying his daughter for lengthy medical..
Read MoreI was a panalist in Asia Pacific Patient Innovation Summit 2021. Topic of the India Hub : “Establishment and governance of patient groups” Archana Panda (Cure SMA) – Moderator Sheela Chitnis (MSSI) Bhushan Ghate (ASWS) Prasanna Shirol (ORDI) Gautam Dongre..
Read MoreRacefor7: Over 4000 participants virtually unite to raise awareness for rare diseases By BioVoice News Desk – March 1, 2021 In the backdrop of 70 million rare disease patients in India, Organization for Rare Diseases India (ORDI) through the event hopes to..
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