The Delhi High Court has directed the constitution of a high-level committee to oversee and strengthen the operation of the National Crowdfunding Platform for Rare Diseases set up by the Ministry of Health and Family Welfare (MoHFW).
The petition was filed on behalf of an infant diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a life-threatening genetic condition. The child requires Zolgensma, a one-time gene therapy costing approximately ₹17.5 crore, which is not manufactured in India and can only be imported with government approval.
Justice Sachin Datta, while noting the plight of the petitioner’s family and other similarly affected patients, examined the implementation of the National Policy for Rare Diseases, 2021 (NPRD 2021) and found that despite the government’s creation of a crowdfunding portal (https://rarediseases.mohfw.gov.in/ ) , donations had been “meagre” only ₹3.9 lakh collected for nearly 4,000 registered patients.
The Court observed that CSR funds could play a vital role in supplementing public contributions, but acknowledged that the judiciary cannot mandate companies to allocate CSR funds. The Court emphasized the need for proactive sensitization of Public Sector Undertakings (PSUs) and corporate entities to voluntarily contribute under the “promoting health care” head of Schedule VII of the Companies Act, 2013.
Accordingly, the Court ordered the formation of a Supervisory Committee comprising:
• Dr. Rajiv Bahl, Secretary, Department of Health Research & DG, ICMR (Chairperson);
• Dr. V.K. Paul, Member (Health), NITI Aayog;
• A Joint Secretary from the Ministry of Corporate Affairs; and
• A Joint Secretary from the Department of Public Enterprises, Ministry of Finance.
The committee has been tasked with:
• Promoting awareness about the crowdfunding platform;
• Encouraging CSR and voluntary contributions from PSUs and corporates;
• Ensuring effective implementation of NPRD 2021; and
• Reporting progress to the Court within 12 weeks.
Justice Datta further expressed hope that funds raised under the committee’s supervision would assist in facilitating the petitioner’s treatment without prejudice to other similarly placed patients.
The matter has been listed for further hearing on December 22, 2025.
Appearances:
Petitioner: Mr. Vikas Singh, Sr. Advocate along with Mr. Varun Singh, Ms. Bhumi Sharma, Ms. Vasudha Singh, Ms. Deepika Kalia, Mr. Sudeep and Md. Atif Ahmad, Advocates.
Respondent: Mr. N. Venkataraman, ASG along with Mr. Kushagra Kansal, SPC and Mr. Rudra Paliwal, GP for UOI.
Mr. Ripudaman Bhardwaj, CGSC for UOI.
Mr. Rajiv Kapur, SC for SBI and Mr. Aksht Kapur, AOR for R-4 (SBI).
Mr. Tanveer Oberoi, Advocate for AIIMS.
