Visited along with Asia PAG to KK Women’s and Children’s Hospital Singapore. We learned and understood the best practico of Childcare, ERT infusion, Day care facilities for Rare Disease Patients and Families...
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February 28 is observed as Rare Diseases Day worldwide in support of millions of patients suffering from various kinds of debilitating medical conditions with hardly any approved medicines or cure available for treatment. Among these groups of patients are a..
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‘Every Individual has a right to live’ Due to the lack of available treatment, patients with rare diseases have little choice but to rely on supportive therapies. There are an estimated 6,000-7,000 rare diseases which have been identified, of which..
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The rare diseases causes a range of physical, cognitive and developmental disabilities and occurs in about one in 10,000 live births. Recently Rare Disease Day was observed by the Indian Society for Clinical Research (ISCR). The event held at Bengaluru..
Read More The Indian Society of Clinical Research (ISCR) and the Organisation for Rare Diseases India (ORDI) are alarmed about the lack of treatment option for 70 million rare disease patients in the country and are keen to intensify clinical research. This..
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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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