The Delhi High Court has constituted a high-level Committee to supervise and monitor the functioning of the Union Government’s digital crowd-funding platform designed to facilitate treatment for patients suffering from rare diseases.

Justice Sachin Datta, while passing the order, directed the Committee to take proactive steps to increase awareness about the platform and its objectives, so as to encourage voluntary contributions from individuals, corporations, and Public Sector Undertakings (PSUs).

The Court emphasized that the initiative’s success depends on sustained public participation and institutional support:

“The aim should be to encourage potential donors to make contributions for the treatment of individuals suffering from rare diseases,” Justice Datta observed.

Composition of the Committee:

• Chairperson: Dr. Rajiv Bahl, Secretary, Department of Health Research, Ministry of Health & Family Welfare, and Director General, ICMR

• Member: Dr. V.K. Paul, Member (Health), NITI Aayog

• Member: An officer of Joint Secretary rank, Ministry of Corporate Affairs (MoCA)—to be nominated by the Secretary, MoCA (in charge of CSR implementation)

• Member: An officer of Joint Secretary rank, Department of Public Enterprises, Ministry of Finance, to be nominated by the Department Secretary

The Court directed that the Committee should engage with PSUs to sensitise them and encourage voluntary CSR contributions for rare disease treatment. It also mandated that the Committee meet at least once a month at the office of the Chairperson or as otherwise decided.

Further, the Court instructed the Committee to ensure that the provisions of the National Policy for Rare Diseases (NPRD), 2021 are effectively implemented and the intended outcomes achieved:

“The Committee shall take steps to ensure that necessary action is taken for effectuating NPRD 2021 and to achieve the outcomes contemplated thereunder, in liaison with concerned Ministries and Authorities,” the Court directed.

The order came in response to a petition filed by a minor girl, Miss Kiara Rawat, through her mother Mrs. Lovely Gusain, who was diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a severe genetic neuromuscular disorder. The petitioner sought assistance for importing life-saving therapy not manufactured in India but available in the USA with requisite medical and governmental approvals.

Although the Central Government’s counsel clarified that CSR funding decisions are autonomously made by the boards of respective companies, the Court observed that PSUs should be encouraged to channel CSR funds toward treatment of rare diseases as part of their social responsibility.

Justice Datta noted that the crowd-funding platform launched by the Union Health Ministry had garnered minimal financial response, revealing the urgent need for oversight and awareness:

“As per publicly available data, till date, for approximately 3981 registered patients, only Rs. 3,91,589/- has been collected,” the Court recorded.

He emphasized that the challenges faced by rare disease patients must be viewed through a “humane and inclusive lens”, and that every effort should be made to make the Union’s innovative platform a success.

Endorsing the petitioner’s suggestion, the Court formally constituted the oversight Committee and expressed hope that funds raised under its supervision would be used to support treatment for the petitioner and similarly situated individuals.

“It is hoped and expected that an endeavour shall be made, without prejudice to the rights of others similarly situated, to utilize the funds raised under the supervision of the Committee towards the medical treatment of the petitioner,” the Court concluded.

The matter is scheduled for further hearing on December 22, 2025.

Case Title: Miss Kiara Rawat Through Mrs. Lovely Gusain v. Union of India & Ors.