An article from ” @ The Hindu” today, 17th July 2020 on the scarcity/ unavailability of drugs for #RareDisease patients who are facing loss of #accesstomedicines due to #COVID; supply interruption of #importeddrugs is a threat to their life and..
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Click below link for audio. https://podtail.com/podcast/the-fertility-motherhood-and-wellness-show-true-st/role-of-prenatal-diagnosis-in-pregnancy/..
Read MoreOrganization for Rare Diseases India (ORDI) has highlighted the importance of creating awareness on Mucopolysaccharidosis (MPS), which is a category of a rare disease. MPS is a part of a group of liposomal storage disorder, which is caused..
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The last page of the Karnataka Hemophelia socity calender Today participated in the Board Meeting of Karnataka Hemophilia Society – Davangere under the leadership of Dr Suresh Hanagawadi. They also passed a resolution to offer me as a ” Advisory Council Member”..
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We Also Inaugurated – Pitrua Astha to support families of Special Childrens. I am a cofounder of an organization. On this occasion, Many VIP and Celebrities blessed us : 1) Mr Srinath – Film Actor Kannada 2) Mr Puneeth Rajkumar – Film..
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Rare disease-right to hope..
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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..
Read MoreAddressed a 150+ students of St Joseph evening college Bengaluru to raise awareness on Rare Diseases and about ORDI works. This is also to create a sensitivity among youths for the UN Human Rights theme for the year 2019 “Youth..
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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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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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