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More awareness required to detect Gaucher, say doctors

More awareness required to detect Gaucher, say doctors

Kolkata: Senior state government doctors felt that more awareness about Gaucher disease is required throughout Bengal along with its early detection, particularly among children.

It is a genetic disease and more and more people are being affected with it. The doctors were speaking at a Gaucher Awareness Programme, an initiative taken by the Lysosomal Storage Disorders Support Society (LSDSS). Dr Debashish Bhattacharya, Director Medical Education, Health & Family Welfare West Bengal; Dr Apurba Ghosh, Director, Institute of Child Health; Dr Monjori Mitra, Professor, Institute of Child Heath; Sib Sankar Chowdhury, joint secretary, LSDSS; Saurabh Singh, national co-ordinator, LSDSS and Shashank Tyagi, Secretary, LSDSS were present on the occasion and addressed the programme.

An estimated number of 40 persons were diagnosed with a rare disease out of which 20 patients are said to be suffering from Gaucher disease. Several rare disease patients and their families were also present. Saurabh Singh, father of Shaurya, said: "The Union government had made a national policy for treatment of these rare diseases in June 2017 but the same was withdrawn by the government and kept under abeyance from last nine months. In the meantime, in last two years, around 10-12 known patients of LSDs have died due to no policy in the country."

Sib Sankar Chowdhury, Joint Secretary, LSDSS, and father of an LSD patient, says: "There are around 250+ patients in India who are suffering from Gaucher disease in which 20 diagnosed children are from Bengal only. "

LSDSS also laid strong emphasis on the Centre to release pledged Rs 100 crore for the treatment of patients and implement the National Policy for Treatment of Rare Diseases 2017, which has been withheld by the government.

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