Advocacy groups for those suffering from rare diseases within India have voiced their disappointment regarding the National Policy for Rare Diseases 2020 Bill, arguing that - in many cases - the Bill offers no support to those affected by rare diseases at all. An estimated one in twenty Indians suffer from illnesses that full under the classification of “rare diseases”. Children account for fifty percent of such cases. Despite this, the illnesses remain neglected, both in terms of funding for research and public awareness. Rare diseases — despite the infrequency that the name implies — cumulatively affect around 350 million people worldwide. This figure includes roughly seventy million Indians. The draft policy suggests that, under the Rashtriya Arogya Nidhi (RAN), a one-time cost of Rs 15 lakh could be provided to aid a select few conditions falling under the definition of rare disease. For the vast majority, the financial aid will be unavailable. For those who are able to … Read Full Article about Rare disease policy deemed ‘Just an eye wash’
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