Delhi High Court Mandates Formation of Oversight Committee for Rare Disease Crowd Funding

Court emphasizes on CSR contributions and voluntary funding to aid rare disease patients; sets up committee for effective platform management.

In a significant development, the Delhi High Court has ordered the establishment of a specialized committee to oversee and enhance the operations of the Crowd Funding Platform designed to assist patients suffering from rare diseases. This decision comes in response to the challenges faced by individuals like Miss Kiara Rawat, an infant diagnosed with Spinal Muscular Atrophy (SMA) Type 1, who require exorbitantly expensive treatments not readily available in India.

Presided by Justice Sachin Datta, the court recognized the limitations faced by the current National Policy for Rare Diseases, 2021 (NPRD 2021) and the insufficient funds generated through existing crowd funding efforts. With the costs for treatments like Zolgensma gene therapy reaching up to Rs. 17.50 crores, the financial burden on families is overwhelming, necessitating alternative funding mechanisms.

The newly constituted committee will include senior officials from various government departments, such as the Ministry of Health and Family Welfare, Ministry of Corporate Affairs, NITI Aayog, and the Department of Public Enterprises. The primary objectives are to spread awareness, encourage CSR contributions from companies and Public Sector Undertakings (PSUs), and ensure the full implementation of NPRD 2021.

The court noted the poor response to the existing crowd funding platform, which has raised a mere Rs. 3,91,589 for 3981 registered patients. It emphasized the need for more vigorous efforts to channel CSR funds into the platform to support the treatment of rare diseases.

Justice Datta stressed the importance of viewing the challenges faced by rare disease patients through a humane and inclusive lens. The court's decision underscores the necessity for collective societal efforts, including voluntary contributions and corporate responsibility, to ensure that patients receive the critical treatment they need.

The committee is tasked with ensuring that the objectives of the crowd funding platform are met and will report back to the court within 12 weeks. The next hearing is scheduled for December 22, 2025.

Bottom Line:

Establishment of a committee for the oversight and effective implementation of a Crowd Funding Platform for treatment of rare diseases, emphasizing the use of CSR funds and voluntary contributions.

Statutory provision(s): National Policy for Rare Diseases, 2021; Companies Act, 2013 Section 135; Companies (Corporate Social Responsibility Policy) Rules, 2014; Rashtriya Arogaya Nidhi; Pradhan Mantri Jan Arogya Yojana.

Miss Kiara Rawat v. Union of India, (Delhi) : Law Finder Doc Id # 2802843