Meeting with DBT Officials – New Delhi
- -
Meeting with DBT Officials – New Delhi discussed possible intervention from scintific side for supporting LSD and Rare Disease...
Read More
Category Archives: Activities
Heard of Pompe, Gaucher’s?
- -
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
- -
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..
Read More
LSD Task Force by ICMR
- -
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...
Read More
Those Genetic Killers- Poineer -New Delhi
- -
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..
Read More
A Call for Attention – from Mail Today, New Delhi
- -
For Clear reading use PDF version Mail Today New Delhi Page 1 Mail Today New Delhi Page 2 By Ritu Bhatia..
Read More
Some Hope- The Hindu
- -
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. ..
Read More
Fighting an unusual Disorder with Extraordinary Will
- -
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...
Read More
12th Annual Asia LSD Symposium (Oct 9-11,2009) at Taipei, Taiwan
- -
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..
Read More
4th International Conference on Birth Defects and Disability in the Developing World, New Delhi
- -
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...
Read More
Mrs Padmaja Ramana from Boston visited home to meet Nidhi
- -
Mrs Padmaja Ramana -NRI from Bengaluru who now stays in Boston visited to see Nidhi in Bengaluru..
Read More
Keeping a Fine Balance – Business World by Gauri Kamath
- -
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..
Read More
Genzyme Team visit to Meet Nidhi
- -
Genzyme Team Mr Anil Raina and Dr Margie from Malaysia visited to Meet Nidhi and to see her progress...
Read More