The court emphasized the need for the government to facilitate funding and develop indigenous treatments for rare diseases, considering them a national priority.

JUDGMENT

Prathiba M. Singh, J. (Oral)

1. This hearing has been done through hybrid mode.

2. The present batch of petitions have been filed by the Petitioners who are mostly children suffering from Rare Diseases. The case of the Petitioners is that the medicines and therapies for the said Rare Diseases are exorbitantly expensive, and directions ought to be issued to the Respondents i.e., the Union of India and its Ministry of Health and Family Welfare, All India Institute of Medical Science (hereinafter, "AIIMS"), as well as, the GNCTD, to provide continuous and uninterrupted treatment to the Petitioners, free of cost.

3. These matters have been heard by the Court from time to time and various directions have been issued for enabling treatment and for making available medicines for the Petitioners.

4. Vide previous order dated 9th December, 2022, this Court had recorded the developments that have taken place to date in the matter. Ld. CGSC was also directed to obtain further instructions on the various aspects captured in the order dated 9th December, 2022.

5. Today, Kirtiman Singh, ld. CGSC has obtained instructions on the said aspects. A short note dated 22nd December, 2022 has also been handed over by the ld. CGSC covering the various aspects of the matter which are being continuously monitored by the Court. This Court has heard the ld. Counsels and perused the said short note. Let the same be brought on record.

Digital Crowdfunding Platform

6. Vide previous order dated 9th December, 2022, it was submitted that the crowdfunding platform is now operational. However, a need was felt for the said platform to be publicized in order to attract funding from the general public and corporate entities, including Public Sector Undertakings ("PSUs"). Accordingly, the following direction was issued by this Court, vide order dated 9th December, 2022:

"9. Accordingly, it is directed that the details of the crowdfunding platform be communicated by the Respondent No.1 to all the Navratna PSUs, as also, at least ten of the top business houses / private companies in India, so as to enable them to consider contribution to the said platform as part of CSR (corporate social responsibility) endeavours. There shall be proper follow up to this communication by the Respondent No.1. Any responses received to the said communication shall be placed on record."

7. As per the short note dated 22nd December, 2022, it is submitted that the crowdfunding platforms are being publicized using proper and effective channels, in the following manner:

• A virtual meeting was held on 17th June, 2021 by the Ministry of Health and Family Welfare (hereinafter, "MoH&FW"), with the representatives of various Ministries, industrial associations, PSUs, etc., to sensitize them about the rare diseases and the need for voluntary donations for the treatment of patients with rare diseases;
• This Court is informed that, at the request of representatives of the various PSUs and industries, a clarification has been sought by the MoH&FW vide DO Letter dated 3rd August, 2021 and 13th June, 2022 in respect of the inclusion of the subject "Donation for Rare Diseases" in Schedule VII of the Companies Act, 2013, in order to facilitate industries/corporates to contribute easily under the Corporate Social Responsibility (CSR) provision contained in Section 135 of the Companies Act, 2013. The Ministry of Corporate Affairs is yet to revert on this aspect.

8. This Court is of the opinion that, in order