The Delhi High Court has constituted a committee to oversee a government-run crowdfunding platform established by the Ministry of Health and Family Welfare for the treatment of rare diseases. The Court said the panel must actively promote the platform, raise awareness, and encourage donations from individuals and organisations.
The committee will be chaired by Dr Rajiv Bahl, Secretary of the Department of Health Research and Director-General of ICMR, and will include Dr V.K. Paul from NITI Aayog, along with officers from the Ministry of Corporate Affairs and the Department of Public Enterprises.
The Court noted that although nearly 3,981 patients are registered on the platform, it has so far raised only ₹3.9 lakh, which it called “meagre.” It directed the committee to collaborate with Public Sector Undertakings (PSUs) to enhance contributions under CSR initiatives.
The order was passed while hearing a plea from the parents of a child suffering from Spinal Muscular Atrophy Type 1, who sought help for a costly overseas therapy. The Court allowed funds from the platform to be used for the treatment, without affecting other beneficiaries, and stressed that the initiative should be seen as a humanitarian effort driven by compassion and inclusion.
The case will be heard again on December 22.