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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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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Fighting an unusual Disorder with Extraordinary Will This was the first article Published in India on the ocasion of World Rare disease day- New Delhi. This has halped many Rare Disease parents in India to come out of the stigma...
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For the first time attended oversees LSD Symposium (Oct 9-11,2009) at Taipei in Tiwan. This was a eye opener in my life. The progress this country has made in Rare Disease Diagnosis and Management is amazing. Looking back my flight..
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Attended the “4th International Conference on Birth Defects and Disability in the Developing World, New Delhi” This conference has shaped my mind to do something about Rare Diseases and Disabilty and inclusivity in India and this a turning Point...
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Mrs Padmaja Ramana -NRI from Bengaluru who now stays in Boston visited to see Nidhi in Bengaluru..
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This is the first article on Rare DIsease In India about Genzyme starting their operations. Mrs Gauri Kamath of Business World has nicely covered the situation of Orphan Drugs in India. Mr Henri Termeer a grat visonary and a kind..
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Genzyme Team Mr Anil Raina and Dr Margie from Malaysia visited to Meet Nidhi and to see her progress...
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