Government releases a draft policy for ‘Rare Diseases’ and launches a ‘Crowdfunding Platform’ for treatment costs

Rare diseases have received worldwide attention in recent days. In India, a 13-month-old Vedika Shinde’s deteriorating health condition from a rare disease had drawn worldwide support. Vedika suffered from Spinal Muscular Atrophy (SMA), a rare disease that occurs due to a single missing gene and results in progressive muscle wasting. After raising money from various crowdfunding platforms, she was administered the world’s costliest injection at Rs. 16 crores. However, the child did not survive. News reports of children from different parts of the country suffering from rare diseases like Gaucher’s disease, Muscular Atrophy, etc. have surfaced more frequently in recent times. 

In the light of recent cases of rare diseases among children and pursuant to the Delhi high court’s order to notify a dedicated online ‘Crowd Funding’ platform for collecting funds for the treatment of children suffering from rare diseases, the Union Government informed the Delhi High Court on 04 August 2021 that it has set up and made operational an online crowdfunding platform (https://rarediseases.nhp.gov.in/) for collecting funds for treatment of children suffering from rare diseases under the newly released Draft National Policy for Rare Diseases, 2021.

No fixed definition of rare diseases

The draft policy recognises the varying definitions of rare diseases. The WHO defines a rare disease as often debilitating lifelong disease or disorder with a prevalence of 1 or less, per 1000 population. However, different countries have their own definitions to suit their specific requirements and in the context of their own population, the health care system and resources. In the US, rare diseases are defined as a disease or condition that affects fewer than 200,000 patients in the country (6.4 in 10,000 people).

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