Today sent request letter to Shri Narendra Modi , Honorable Chief Minister of Gujarat Ahmedabad, Gujarat. and Shri Jay Narayan Vyas ,Honorable Minister of Health & Family Welfare Government of Gujarat, Ahmedabad, Gujarat. Requesting for Requesting for creation of a special fund for..
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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 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 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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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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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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Wrote a Letter to Lokasabha Secretory for treatment support to Rare Diseases – LSD ( Lysosomal Storage Disorders patients on 27 Aug 2011..
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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...
Read MoreWritten 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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