Prasanna Kumar Shirol, President, Lysosomal Storage Disorders Support Society (LSDSS), Rare genetic Disorders Awareness Meet, Hyderabad, Andhra Pradesh. Lysosomal Storage Disorders are ultra rare genetic disorders and are of 45 kinds. ..
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Actor Karthi Sivakumar donating amount to LSDSS he won in Tamil Version of “Kaun Banega Karodapathi” (KBC) in Vijaya TV in Chennai. To announce this a Press meet was conducted...
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My passion to learn how each patients live in their house and to understand the family condition, How each parents with Rare Disease feel, Plan and take care of their loved one. This is a great learning form me to..
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CME on LSD was organised to create awareness about Treatable LSD in Ahmedabad , Gujrat on 8th April 2012. THis was in association with Dr JAyesh Seth from Institute Of Human Genetics. Dr Seema Kapoor- MAMC, Delhi, Dr Mamta Muranjan-..
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Participated in the first ever meeting of Shire in Mumbai – India to discuss the Standard Operating Procedure to start a Humanitarium Program. This is the effort of 3 years continues lobbying with company and throgh MPS society – UK. ..
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Speaker at CME on Metabolic Diseases in Pediatric Practice and presented activities of LSDSS organized by department of Pediatrics, SAT Hospital Medical College, Thiruvananthapuram..
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This day is a special day. After continues effort of Advocacy, Several meeting with Chieif Minister, HEaltH Minister, Health Secretory, Followup from LSDSS Delhi team, with Delhi Govt. This letter was a Point of HOPE...
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This is a video of Nidhi Shirol- 12 year old girl having a ultra rare genetic disorder called “Pompe”. Nidhi Shirol is also First Pompe PAtient in India. This is produced by LSD Support Society for public awareness...
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We had arranged a Press meet in Chennai to announce formally the support of Mr Karthi Sivakumar- Leading cine actor in Tamilnadu and South India as a “Cause Ambassador” to LSDSS( Lysosomal Storage Diseases Support Society. ..
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Attended “Patient Group Leader Meeting” in Hong Kong on April 15, 2011, Alongwith Mr Manjit Singh...
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This one of the initial awareness on Genetic and Rare Diseases in Karnataka. This is a starting point of Advocacy in Karnataka. This also has my story as a father doing everything to save my daughter Nidhi. https://bangaloremirror.indiatimes.com/bangalore/others/the-trouble-is-relative-say-docs/articleshow/21795729.cms ..
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