Organised a Peace protest on behalf of LSDSS in Bengaluru . More than 30 families came attended to demand treatment to their children diagnosed with LSD diseases like Pompe, Gaucher, MPS, Fabry etc. This was well received by the media...
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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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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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Arranged a Peace protest requesting Govt of Karnataka to set up a Special Rare Disease Center in IGICH ( Indira Gandhi Institute of Child Health Bengaluru. This is a State owned Tertiary care center for Children 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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Represented in India in Orphan Drug Asia 2014 in Singapore. We discussed on “Addressing Gap in Special Health care Needs for Rare Disease Patients in India”. ..
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Particpated to support the Global Launch of “Primary Immune Deficiency Week” (PI) Week in Delhi conducted by Indian Patients Society for Primary Immunodeficiency – IPSPI, India on 22nd April 2014. This was superheaded by Mrs Ruby Chawla – Founder and..
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Organized a World Immunology Day in association with Primary Immune Deficiency Patients Welfare Society at Bengaluru Medical College Hospital..
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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...
Read MoreAttended International GSD Meeting and International Pompe Meeting at Heidelberg, Germany 2013 ..
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Continued Medical Education (CME) on Lysosomal Storage Disorder (LSD) and Primary Immune Deficiency (PID) on 31st Aug 2013 at Indira Gandhi Institute of Child Health to create a awareness. This was inagurated by Dr Premalatha- Director IGICH, Dr Benakappa –..
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Participated in Mumbai Marthon in 2013 along with Ms Sangeeta Barde- Co-founder and Director, Team of volunteers lead by Mr Kingshuk Ganguly . This was one of the first ORDI outdoor Awareness event. We also had the opportunity to speak..
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Orphan Drug Congress Singapore 2013. As a Speaker spoke on Opportunities for Orphan Drug companies in India . In Panal Discussion we discussed on Collaboration of Mutually Favorable Outcome for Patient Groups and Industry Players in Asia Pacific...
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