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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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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Lifestyle / 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..
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Racefor7: 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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Right to HOPE Blog No 2..
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Dear Well wisher, All of us have many thoughts, ideas, views, on the same subject and we often fail to express and sometime regret later. Many times louder voice is more heard than the softer or the correct one,..
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This article from the Hindustan Times comes in mid of desperation from Rare Disease patients and families and as a hope for 2020. The tension is that, the silence for the of Ministry of Health on the announcement of the..
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I am happy to share that, For the first time in India we have inaugurated “Inclusive Living Space” for 1) Differently Abled / Persons affected with Rare Diseases who are working / planning to work in Bengaluru and they need..
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on 15th Dec 2019 we celebrated Birthday of Mr Vilas Shindhe – Rare Disease Warrior affected with Atexia. he is alos first Guest at “Inclusive Living Space”. This is a Joint initiative of Pompe Foundation and Inclusive In India..
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My story is published in one of the chapter of this book Published by Ashoka. Link to the PDF version of Book – Leading Social Entrepreneurs-Ashoka LSE 2019 .pdf..
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Participated and was part of Inauguration function in the Pediatric Bio Ethics Symposium-2019 on 1st Dec 2019 for the third year on behalf of ORDI under the leadership of Dr Jagdish Chinnappa -Consultant Pediatric and Child Care, Manipal Hospital and..
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This is the article published in Anand Bazar Patrika in Kolkata This is a good news that, West Bengal Govt has constituted a ” West Bengal State Technical cum Administrative Committee for Rare Diseases. This is a 7 member committee..
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I was part of Inauguration and Speaker at ” IEM day” at Nagpur organized by MERD India Foundation, Nelson Mother and Child Care Hospital, and Indian Academy of Pediatrician, National Neonatology Forum and FOGSI, I spoke about ORDI and expectation of..
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ORDI has written a letter to 500 Member of Parliament of India and 30 members of Parliamentary Standing committee on Health. Patients group and Patients are in dark about the National Rare Disease policy for Treatment of Rare Diseases. This..
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https://www.facebook.com/watch/?v=407546716608288..
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Attended a consultation meeting on behalf of ORDI along with Mr Madhan -CEO organized by “Health and Humanities Division of St John’s Research Institute, a sister organisation of the St John’s Medical College and Hospital”. Who are focused on engaging..
Read More“I am very pleased about your achievement. Richly deserved” Dr Meenakshi Bhat Consultant in Clinical Genetics MBBS, MD (Paed), DCh, DNB (Paed), MRCP (Ire), CCST-Clinical Genetics (UK) On receiving Global Gene “Rare Champion of Hope 2019” award..
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At ORDI we kicked off Awareness campaign today. Are you aware of hashtag#RareDisease ? An ORDI initiative to create awareness To identify any undiagnosed case still suffering Get it in touch with a Rare disease patient, family ……………… and to..
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Rare Champion of Hope Award 2019 by Global Genes, San Diego, USA award acceptance Speech. I have received this award on behalf of 70 million Rare Disease patients and my Daughter Nidhi. ..
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“Prasanna Shirol’s name has been synonymous with cause of Rare Diseases in India. Its people like Prasanna who can bring about a tangible change in society through their untiring, focused and selfless efforts. I wish him success in all his..
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