Written letter to The Secretary , Lok Sabha Secretariat
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Written letter to The Secretary , Lok Sabha Secretariat, New Delhi requesting Government support in treating a group of rare genetic disorders, LSDs..
Read MoreCategory Archives: Activities
Speaker at CME on Metabolic Diseases in Pediatric Practice
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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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Received a letter from Chief Minister Smt Shiela Dikshit – Some light in the tunnel
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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...
Read MoreWritten letter to Chief Minister,Health Minister Govt of Kerala
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Written letter to Chief Minister,Health Minister Govt of Kerala Requesting to provide Enzyme Replacement Therapy (ERT) to Master Govind (7 yrs.) diagnosed with Pompe Disease. His sister lost life to Pompe Disease it self. ..
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Karthi Pledge Support to LSDSS – Press Meet – Chennai
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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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Patient Group Leader Meeting Hong Kong April 15, 2011
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Attended “Patient Group Leader Meeting” in Hong Kong on April 15, 2011, Alongwith Mr Manjit Singh...
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13th ANNUAL ASIA LSD SYMPOSIUM JW Marriott Hotel, Hong Kong 15 – 17 April 2011
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Attended 13th ANNUAL ASIA LSD SYMPOSIUM in JW Marriott Hotel, Hongkong from 15 – 17 April 2011. This conference helped to understand new develoments in Lysosomal Storage Diseases from renowned Doctors and scintists. This was an opportunity to meet Patients, Parents,..
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World Rare Disease Day 28th Feb 2011, Chennai. Actor Karthi Shivakumar blessed the Occasion
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World Rare Disease Day 28th Feb 2011, Chennai. Actor Karthi Shivakumar blessed the Occasion. This was jointly organised by LSDSS and Fetal Care Research Foundation Health Secretory was the Chief Guest. Dr Suresh from Fetal Care Research Foundation, Dr Sujatha..
Read MoreWrote letter to HON. CHAIRPERSON OF NATIONAL HUMAN RIGHTS COMMISSION
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Wrote letter to Shri K.G.BALAKRISHNAN HON. CHAIRPERSON OF NATIONAL HUMAN RIGHTS COMMISSION FARIDKOT HOUSE, COPERNICUS MARG ,NEW DELHI , PIN -110001 on 4th February 2011 ..
Read MoreRequest for Creation of corpus fund for comprehensive management of Lysosomal Storage Disorders.
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Writen letter to The Principal Secretary (Health and Family Welfare), Government of NCT of Delhi New Delhi requeting ” Creation of corpus fund for comprehensive management of Lysosomal Storage Disorders”..
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White paper submitted to the Hon’ble Chief Minister’s office in New Delhi on behlaf of LSDSS.
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The white paper which was envisaged to include prevalence of these diseases, diagnostic infrastructure available in Delhi, doctors’ expertise and awareness regarding LSDs, access to treatment of treatable LSDs, prevention, genetic counseling and supportive care. This was prepared based on..
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Meeting with Mr Dinesh Trivedi – Minister of State Health and Family Welfare New Delhi
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Meeting with Mr Dinesh Trivedi – Minister of State Health and Family Welfare New Delhi. Reqested for treatment of LSD patients in India...
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Meeting with Dr V M Katoch – ICMR- DG
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Meeting with Dr V M Katoch – ICMR -Secretary Department of Health (DHR)& Director General Indian Council of Medical Research; Ministry of Health and Family Welfare, Government of India. This meeting is the first step of success in Indian Rare..
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Meeting with DBT Officials – New Delhi
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Meeting with DBT Officials – New Delhi discussed possible intervention from scintific side for supporting LSD and Rare Disease...
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Heard of Pompe, Gaucher’s?
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This article in Times has helpe to create awareness in Bengaluru and Karnataka...
Read MoreMet Smt Sheila Dikshit, Honorable Chief Minister of Delhi and Honb’le Health Minister
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Met Smt Sheila Dikshit, Honorable Chief Minister of Delhi and Honb’le Health Minister. After a long deliberation, Madam Chief Minister asked the four reputed doctors from premium hospitals of Delhi who were present in the meeting to develop a proposal..
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LSD Task Force by ICMR
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The set up of Expert group to study Early Dignosis, Treatment and Research for LSD diseases. This is the begining of focus on LSD in India by a premium Goverment Agency. The letter given on behalf of LSDSS...
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Those Genetic Killers- Poineer -New Delhi
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This is one of the initial major media coverage in India for Rare Diseases, LSD ( Lysosomal Storage Disorders. This has Nidhi Shirol Story and jeorny of ours along with MPS Mucopolysachridosis , Gaucher. This narrates the challanges of Rare..
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