In India, 70 million are likely to be suffering from rare genetic disorders. Usually, the road to diagnosis is long and brooding. In many cases, it may take up to a couple of decades for a correct diagnosis.
Alok Bhattacharya, a biomedical scientist, talks about rare genetic diseases, the stigma attached around them and why there is a need to raise awareness. Bhattacharya, whose daughter is suffering from GNE myopathy, has set up a NGO called World Without GNE Myopathy (WWGM) which works to raise awareness about rare genetic disorders.
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