The Delhi High Court’s recent order may bring a much-needed reset to the crowdfunding portal for rare-disease treatment, a Union Health Ministry initiative that is struggling to attract funds, having raised just ₹3.9 lakh for over 4,000 registered patients in three years since its launch in 2021.
The initiative was launched with the hope that India’s corporate sector, philanthropists, and compassionate individuals would step in to fill a life-saving gap. However, for families with members battling disorders like spinal muscular atrophy (SMA) – where a single life-saving injection could cost around ₹17.5 crore – the crowdfunding platform’s failure has meant despair and lost hope.
Manjit Singh, who lost two sons to Hunter syndrome and now heads the Lysosomal Storage Disorder Support Society, told The Hindu that over 50 patients suffering from rare diseases have died in the past two years. He called these “preventable deaths”.
In an order passed on October 28, the High Court constituted a high-powered committee, chaired by Dr. Rajiv Bahl, Secretary of the Department of Health Research, Ministry of Health and Family Welfare (MoHFW), to “supervise and revive” the crowdfunding platform.
Justice Sachin Datta, in the order, observed that 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”.
“There can be no cavil with the inference that the crowdfunding efforts undertaken by setting up the crowdfunding platform, is required to be supplemented by vigorous efforts to garner funds, including by way of channelisation of corporate social responsibility (CSR) funds into the crowdfunding platform,” Mr. Datta said.
Awaiting funds
Currently, there are 12 Centres of Excellence (CoEs) across the country dedicated to treating patients with rare diseases. There are currently 4,097 patients registered with the Centre’s rare disease portal, who are “ready for treatment” but awaiting funding.
In July this year, a meeting was held with the CoEs under the chairpersonship of the Joint Secretary (RD), MoHFW. The representatives of some CoEs informed that they had earlier written letters to Public Sector Undertakings (PSUs) and companies requesting them to offer CSR funding for patients with rare diseases.
‘Reluctant to offer funds’
It came to light that companies and PSUs are “reluctant” to offer CSR funding due to their preference for building infrastructure over patient treatment. They also highlighted the constraints in CSR rules of respective companies/PSUs.
Agreeing with the Centre’s submission that that the Court cannot direct companies or PSUs to allocate their CSR funds, Justice Datta stressed that it would be desirable to “sensitise them to undertake initiatives related to rare diseases and earmark CSR funds for the same”.
“The same would be warranted because, as per office memorandum dated August 27, 2021, issued by the Ministry of Corporate Affairs, Government of India (as stated above), it has been clarified that the treatment of patients suffering from rare diseases comes within the purview of item no. (i) of Schedule VII of the Companies Act, 2013 under the head promoting health care, including preventive health care,” the Court noted.
‘Failed to take off’
Families of patients with rare diseases have long argued that the portal lacked visibility, structural incentives, and institutional backing.
“Who is going to donate to a government-run portal when hardly anyone even knows it exists? Currently, only patients and a select group of doctors are aware of it. If the policy envisions CSR funding and crowdfunding, then the government must actively popularise the platform,” Prasanna Shirol, co-founder of Organisation for Rare Diseases India, said.
On the question of getting funding from companies and PSUs, Mr. Shirol pointed out, “There is simply no structured communication or engagement with major industries and PSUs, and that is why the initiative is failing to take off.”
Published – November 16, 2025 08:11 am IST
