Rare Disease Day: Living With a Rare Disease The Indian Society of Clinical Research (ISCR) and the Organisation for Rare Diseases India (ORDI) are keen to intensify the clinical research for treatment of rare diseases. ISCR and ORDI teamed up..
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Media Coverage of Press Conference on the occasion of World Rare Disease Day 2015 in Bengaluru in Prajavani. This was jointly conducted by ORDI and ISCR ( Indian Society for Clinical Research) in Feb 2015...
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Media Coverage of Press Conference on the occasion of World Rare Disease Day 2015 in Bengaluru in The Hindu -Bengaluru. This was jointly conducted by ORDI and ISCR ( Indian Society for Clinical Research) in Feb 2015...
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Media Coverage of Press Conference on the occasion of World Rare Disease Day 2015 in Bengaluru in Times of India -Bengaluru. This was jointly conducted by ORDI and ISCR ( Indian Society for Clinical Research) in Feb 2015...
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Media Coverage of Press Conference on the occasion of World Rare Disease Day 2015 in Bengaluru in Times of India -Bengaluru. This was jointly conducted by ORDI and ISCR ( Indian Society for Clinical Research) in Feb 2015...
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Media Coverage of Press Conference on the occasion of World Rare Disease Day 2015 in Bengaluru in Kannada Prabha. This was jointly conducted by ORDI and ISCR ( Indian Society for Clinical Research) in Feb 2015...
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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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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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