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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Sit In Protest Invitation by Rare Disease Children -LSD..
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India’s first Pompe Patient Nidhi Shirol , Sharada Shirol during Dharana to appeal for Treatment to Govt of Karnataka in Kasturi NewsLSD (Rare Disease) Patients appeal for Treatment to Govt of Karnataka in Kasturi News..
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After many years met high school classmate Onkar Ainapur. He is now a professor in Goa Govt College..
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Janashri TV channel Media Coverage of Patients Peace protest in Bengaluru..
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Samaya TV coverage during Press Meet -Appeal to Karnatka Govt by Rare Disease patients in Karnataka ..
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Receiving first Donation of Rs 25 Lakhs under “Cosprate Social Responsibility”(CSR) to ORDI from Mr Naz – CEO Quintiles towardssetting up of RDCCC ( Rare DIsease Care Coordination Center) ..
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At Rainbow Across Border -Meeting in Singapore with Asia Patient Leaders Support groups Meeting 2014..
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Speaking to Media on occasion of Media Interaction in Andra Pradesh requesting Govt of AP to extend support to LSD Patients in the sate. ..
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About Pompe- A programme by Udaya TV – Sanjeevini Program with Prasanna Shirol and Daughter Nidhi who is suffering from Pompe...
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