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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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..
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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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HEALING BEYOND DISEASE LUNCH & LEARNS: A SERIES TO EDUCATE AND INSPIRE I addressed a employee gathering at : Amicus Therapeutics – New Jersey- USA, We discussed on ORDI global efforts to raise awareness for rare diseases in India. and..
Read MorePatient groups plead for interim assistance for patients with rare diseases NEW DELHI, Aug 27: Concerned over the ‘delay’ in the implementation of a national policy for treatment of rare diseases, patient advocacy groups have appealed to the Union Health..
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Organization for Rare Disease India (ORDI) and Lysosomal Storage Disorder Support Society (LSDSS) have written to Union Health minister Harsh Vardhan asking him to provide an interim assistance till the National Policy Treatment of Rare Diseases (NPTRD) is formulated. New..
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Experts call for action to make National Rare Diseases Policy a reality Represented ORDI in Round table Discussion on Rare Diseases Policy -Deliberating the way forward on 27th July 2019 at India Habitat Centre, New Delhi organized by Health..
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Conducted DMD parents meeting by Dr Ann Mathew, Dr Ilin, dr Dipanjana Dutta . more than 40 Parents attended the meeting...
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RDCCC Inauguration at ICh Chennai. Mr Zia..
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Wishbone day – International Awareness day Observed by IOIF to create awareness on osteogenesis Imperfecta iN lalbagh, Mrs Tejaswaini Ananthkumar was Chief Guest...
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“Mr. Shirol mentioned that it took seven years to diagnose his daughter with Pompe disease although there were symptoms since the child was few months old.” Download PDF of this article Mohua-Gayatri-OrphanetJournal-May2019 ..
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Participated as a panelist in CIOMS (Council for International Organization of Medical Sciences )Open Meeting on “Patient Involvement in the Development and Safe Use of Medicines” on 30 April 2019, Geneva and represented Indian Rare Disease community...
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Race for 7 in Delhi for 2019 was conducted in IGIB – Institute of Genomics and Integrated Biology. All the Delhi Based PAG and patients group participated. We conducted Race for 7 in 11 cities in the 2019 version...
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I was a invited speaker at the first HAE parents meeting in India. Shmabavi from ORDI has joined the meeting...
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It was a memorable day for ORDI -Racefor 7 and for me to get Mr Narain Karthikeyan – First Formula One driver from India to flag off in Coimbatore in Tamilnadu. This event was conducted in PSG Hospital ground. With..
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It took seven years for one patient to be correctly diagnosed with Pompe disease. This disease needs enzyme replacement therapy (ERT), which can cost up to Rs 1 crore per person per year. This was beyond the means of the..
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