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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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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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. 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 Shri K.G.BALAKRISHNAN HON. CHAIRPERSON OF NATIONAL HUMAN RIGHTS COMMISSION FARIDKOT HOUSE, COPERNICUS MARG ,NEW DELHI , PIN -110001 on 4th February 2011 ..
Read MoreWriten 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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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. Reqested for treatment of LSD patients in India...
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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 discussed possible intervention from scintific side for supporting LSD and Rare Disease...
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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. 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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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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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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For Clear reading use PDF version Mail Today New Delhi Page 1 Mail Today New Delhi Page 2 By Ritu Bhatia..
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Need for Specific Health care policy, Scarcity of Specilized Doctors, Deleyed Dignosis and Treatment is the key issue. This is common for all Rare Disease parents and families. ..
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