The Delhi High Court has established a four-member committee to supervise and enhance the functioning of the national crowdfunding platform created under the National Policy for Rare Diseases, 2021 (NPRD-2021). The directive was issued by Justice Sachin Datta while hearing a petition filed by the mother of an infant suffering from Spinal Muscular Atrophy (SMA), who sought financial assistance to import an extremely costly gene therapy drug unavailable in India.
During the proceedings, the Court observed that the government’s crowdfunding platform, though intended to facilitate voluntary donations for rare disease patients, had shown dismal results. Despite nearly 4,000 patients registered on the portal, total contributions amounted to only about ₹3.91 lakh—an amount the Court described as “grossly inadequate” compared to the immense medical and humanitarian needs involved.
To address these shortcomings, the Court directed the formation of a supervisory committee to strengthen the portal’s implementation and improve fund mobilisation. The committee is tasked with increasing awareness about the crowdfunding mechanism, engaging public and private sector entities, and encouraging the channeling of Corporate Social Responsibility (CSR) contributions toward the treatment of rare diseases. It has also been asked to meet at least once every month and submit progress reports within twelve weeks.
The committee comprises the following members:
Chairperson: Dr. Rajiv Bahl, Secretary, Department of Health Research and Director General, Indian Council of Medical Research (ICMR)
Member: Dr. V.K. Paul, Member (Health), NITI Aayog
Member: A Joint Secretary–level officer from the Ministry of Corporate Affairs (overseeing CSR initiatives)
Member: A Joint Secretary–level officer from the Department of Public Enterprises, Ministry of Finance
The Court stressed that the issue of rare disease treatment must be viewed not merely as an administrative or budgetary challenge but as a matter of human dignity and constitutional compassion. It observed that while the NPRD-2021 had created an institutional framework, effective governance and proactive engagement were essential for translating policy into tangible impact.
This intervention by the Delhi High Court aims to revitalise India’s approach to rare disease management by bridging the gap between public policy and ground-level implementation, ensuring that access to life-saving treatments does not remain an unfulfilled promise for those battling rare conditions.
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