Organized LSD Patients and Parents Apeal to Karanataka State Govt in CHG on 3rd Aug 2012
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Category Archives: Activities
Written letter to CM, Health Minister, Minister of Medical Education and others
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Today written letters to Andra Pradesh Govt requesting to Request to provide Enzyme Replacement Therapy (ERT) to Baby Harshini (16 months) Mr. N Kiran Kumar Reddy, Hon’ble Chief Minister ,Govt. of Andhra Pradesh,Hyderabad Sri. K. Murali Mohan, Minister for Medical Education,..
Read MoreOrganised a “Media WorkShop” on behalf of LSDSS in Hyderabad -Andra Pradesh
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Organised a “Media WorkShop” on behalf of LSDSS On Thursday, 21 June 2012 on Gaucher Diseases. Gaucher disease is a rare genetic disorder that affects an estimated 1 in 50,000 to 1 in 100,000 people in the general population Present on..
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CME in Ahmedabad- Gujrat
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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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World Rare Disease Day 28th Feb 2012, Mumbai, Singer Mr Shaan blessed the Occasion
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Conducted the World Rare Disease Day for the 3rd year in Mumbai Jointly with KEM hospital Mumbai. Singer Mr Shaan blessed the occasion. Dr Mamata Muranjan and all the Gentic doctors from India attended the function...
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Shire First Meeting in India for Humanitarium Program
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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. ..
Read MoreWritten 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..
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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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