Delhi High Court constitutes committee to oversee crowd-funding for treatment of rare diseases

The National Policy for Rare Diseases, 2021, provides for voluntary crowd-funding measures for the treatment of illnesses mentioned in it. Under the scheme, the government provides coverage of ₹50 lakhs.

Taking note of the fact that the crowdfunding platform under this policy has so far accumulated only a meagre amount, the Court said its endeavor was to augment the measures to facilitate the treatment of rare diseases

“The limited purpose of the present order is to ensure that suitable measures are taken to effectuate the purport of setting up of aforementioned Crowd Funding Platform and to ensure that sufficient resources can be augmented thereunder. The challenges faced by individuals suffering from rare diseases, are required to be seen through a prism of inclusion and humane lens; rather than being merely considered as a medical problem,” the Court stated.