The Union government had also established the Digital Portal for Crowd Funding and Voluntary Donations for Patients of Rare Diseases to register such patients and raise money for their treatment via crowdfunding.
Rare diseases are lifelong conditions. Approximately 95 per cent of them have no approved treatment. In cases where drugs are available, they are prohibitively exorbitant. Fakir, who earns less than Rs 10,000 per month, says his son's treatment costs Rs 30 lakh per annum.