Race for 7 Media Release- My Quote “Rare diseases are not really as rare as we think there are. It is estimated that there are 70 million rare disease patients in India and one out of every twenty Indians suffer..
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CME on Pompe in NIMHANS in Bengaluru was conducted. This was attended by Dr Meenakshi Bhat, Dr Asha Benakappa- Director IGICH and Other Doctors from bengaluru..
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Precision medicine can offer HOPE to Rare Disease Patients. The Rare Diseases have not received the attentionthey deservedwithin the health Policy Initiatives in India , feels Prasanna Kumar B Shirol.v- Bio Voice News -Aug 2016 Download PDF for full..
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ORDI Race for 7- 2016 Press Meet coverage by B TV..
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ORDI Race for 7- 2016 Press Meet coverage by Kasturi News..
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Organized a ORDI’s First all India PAG ( Patients Advocacy Group) Meeting at MS Ramaiah Hospital Bengaluru. Harsha Rajasimha, Dr Sudha from Center for Human Genetics, Mr Anand from DART, and others were participated . Disease gropu represented were Pompe,..
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Organized and Launched a special support group for persons with RP (Retintis Pigmentosa).Association of People with Rare Eye Diseases.ThiswasLedbyMrSubramani who is working With Deccan Herald and Smt Anadi Vishwanathan. The book “Lights OUT” written by Mr Subramni was also introduced..
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Organized a ORDI First all India PAG ( Patients Advocacy Group) Meeting at MS Ramaiah Hospital Bengaluru. Harsha Rajasimha, Dr Sudha from Center for Human Genetics, Mr Anand from DART, and others were participated . Disease gropu represented were Pompe,..
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Asia-Pacific Alliance of Rare Disease Organizations ( APARDO) Launch in Singapore 2015. Under the leadership of Mrs Durhane Wong-Rieger,President & CEO-Canadian Organization for Rare Disorders. This is the first Board Meeting. Mr Bill Claxton, Dr Ratnadevi from IAPG and others..
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Asia-Pacific Alliance of Rare Disease Organizations ( APARDO) Launch in Singapore 2015. Under the leadership of Mrs Durhane Wong-Rieger,President & CEO-Canadian Organization for Rare Disorders..
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Conducted first Rare Disease Camp in Hatti Gold Mine- Raichur..
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Partipated in a Rare Disease Asia Conference 2015- Love Is Not Rare . We Presented a Poster on ORDI -RDCCC for the first time and received lot appreciation for the concept...
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Partipated in a Rare Disease Asia Conference 2015- Love Is Not Rare . I was one of the Organizing Committe Member on behalf of ORDI and Alos Member of the faculty at the inagural. I also Partipated in the panel..
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Partipated in a Rare Disease Asia Conference 2015- Love Is Not Rare . I was on eof the Organizing Committe Member on behalf of ORDI. I also Partipated in the panel Discussion ” Landscape of the Support Networks for Rare..
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Organized a Peace protest demading the treatment from Govt of Karnataka. More than 40 Patients and 100’s of Family members , Care givers and other stake holders participated. Media support was very good. This event was very successful and finally..
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More than 40+ LSD parents in Bangalore assembled in Bangalore urging the Govt of Karnataka to release budget for treatment of Rare Disease on 1st Nov 2014 in Freedom Park. COverage by Kasturi News...
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