Together for Rare
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Category Archives: Activities
Pediatric Bioethics
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Click below link for more information 2020-PediatricBioethicsBrochure-v3 ..
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Can Inspire
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On this episode, Pallavi chats with Prasanna Shirol about his daughter, Nidhi’s extremely rare disease, Pompe. Here’s an unbelievable story of the unimaginable. Click the link below for the audio mailer https://youtu.be/vqwZUVCNF_8 http://shows.wyn.studio/rF_jI_MI..
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Pandemic Weighs heavily on patients with rare diseases.
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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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Role of Parental Diagnosis In Pregnancy
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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 highlights on a liposomal storage disorder, Mucopolysaccharidosis
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Organization 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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Advisory Council Member – Karnataka Hemophelia Society – Davangere
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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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I was invited as a Moderator for Panel Discussion in “DASHANJALI” Program arranged by TAMHAR on its 10th year annual Function.
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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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Health Vision Media – Right to Hope
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Rare disease-right to hope..
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Health ministry plans policy for rare diseases’ treatment
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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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Inauguration of India’s First Inclusive Living Space by Pompe Foundation and Inclusive In India
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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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Birthday of Mr Vilas Shindhe – Rare Disease Warrior affected with Atexia
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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 MoreInteraction with St Joseph evening college students Bengaluru
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Addressed 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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Pediatric Bio Ethics Symposium 2019
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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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Anand Bazar- Committee for the treatment of rare diseases
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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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IEM day at Nagpur Organised by MERD India
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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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