Sun Nov 16 02:41:13 UTC 2025: Summary:
The Delhi High Court has intervened to revitalize a struggling government crowdfunding platform for rare disease treatments. The platform, launched in 2021, has raised a meager ₹3.9 lakh for over 4,000 registered patients due to a lack of visibility, incentives, and engagement with corporations for CSR funding. The court has formed a high-powered committee to supervise and revive the platform, urging for increased awareness and the channelization of CSR funds towards treating rare diseases. Families of patients lament the platform’s failure and the resulting “preventable deaths,” highlighting the urgency for more effective funding mechanisms.
News Article:
Delhi High Court Orders Overhaul of Rare Disease Crowdfunding Platform
New Delhi, November 16, 2025 – The Delhi High Court has issued a directive aimed at reviving a floundering government initiative designed to crowdfund treatment for patients with rare diseases. Launched in 2021 by the Union Health Ministry, the platform has garnered a paltry ₹3.9 lakh over three years, leaving over 4,000 registered patients in dire straits.
The initiative intended to tap into India’s corporate social responsibility (CSR) funds and the generosity of individuals. However, families with members suffering from conditions like spinal muscular atrophy (SMA), where life-saving treatments can cost upwards of ₹17.5 crore, have been left disillusioned. Manjit Singh, head of the Lysosomal Storage Disorder Support Society, highlighted the tragic consequences, stating that over 50 patients with rare diseases have died in the past two years due to lack of funding.
In an order passed on October 28th, Justice Sachin Datta established a high-powered committee, led by Dr. Rajiv Bahl, Secretary of the Department of Health Research, to oversee the platform’s revival. The court emphasized the need for a compassionate and inclusive approach to addressing the challenges faced by those with rare diseases, urging for more vigorous efforts to secure funds, including through CSR channels.
While acknowledging that the court cannot mandate CSR contributions, Justice Datta stressed the importance of sensitizing companies and Public Sector Undertakings (PSUs) to the needs of rare disease patients, citing existing guidelines that include rare disease treatment under healthcare initiatives.
Advocates like Prasanna Shirol, co-founder of Organisation for Rare Diseases India, point to the platform’s lack of visibility and structured engagement with corporations as key reasons for its failure. “Who is going to donate to a government-run portal when hardly anyone even knows it exists?” Shirol asked, emphasizing the need for a robust communication strategy to attract CSR funding and individual donations.
The Delhi High Court’s intervention offers a glimmer of hope for patients and families desperately seeking access to life-saving treatments for rare diseases, but successful implementation hinges on effective leadership, increased awareness, and meaningful partnerships with the corporate sector.
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