JUDGMENT Prathiba M. Singh J. (Oral) 1. This hearing has been done through hybrid mode. 2. Today, a supplementary affidavit has been handed over to the Court on behalf of the Ministry of Health & Family Welfare. The said affidavit shows that as per the Ministry, Rs.40 crores have been released to the eleven Centers of Excellence which are dealing with Rare Diseases patients. 3. Let the supplementary affidavit be brought on record. 4. It is submitted by Mr. Kirtiman Singh, ld. CGSC that an application was preferred in the LPA pending before the ld. Division Bench, being LPA 364/2023 titled Union of India v. Alishba Khan seeking modification of order dated 3rd May, 2023 passed by this Court seeking exemption from personal appearance of the Secretary, as was directed by this Court. It is his submission that the ld. Division Bench has modified the order to the effect that instead of the Secretary, Ministry of Health and Family Welfare, a Joint Secretary shall remain present in Court. Accordingly, Mr. Rajiv Manjhi, Joint Secretary, Ministry of Health and Family Welfare is present in Court today. 5. It is submitted on behalf of one of the Petitioners that as per an email sent on behalf of Sarepta, the said company is also willing to discuss a subscription model with the Government of India in which the Government can pay annual fees for blocks of patients. It has further been stated in the email that by the end of the year, almost 80 patients of DMD will obtain free of cost medication as part of Sarepta's clinical trials. 6. The said email has been handed over to Mr. Kirtiman Singh, CGSC for seeking instructions in this regard. 7. On behalf of the BIRAC it is submitted that an affidavit has been filed yesterday i.e. on 9th May, 2023. Let the same be brought on record. 8. On behalf of AIIMS, ld. Counsel Mr. Oberoi submits that thought the funds have been received, the same would be grossly inadequate as there are more than 600-700 patients with rare diseases who are awaiting medicines and therapies. Let a chart be placed on record giving the nature of rare diseases and the number of patients who are awaiting treatment qua each of the diseases on the next date of hearing. 9. List on 15th May, 2023 at 2:30 pm.