DELHI HIGH COURT
PRATHIBA M.SINGH
Arnesh Shaw – Appellant
Versus
Union of India – Respondent
| Table of Content |
|---|
| 1. need for affordable treatment for rare diseases. (Para 2 , 5 , 18) |
| 2. establishment and management of a rare diseases fund. (Para 4 , 6 , 7 , 10 , 11) |
| 3. indigenous development critical for rare disease treatment. (Para 15 , 19) |
| 4. commencement of treatment as per court orders. (Para 21 , 22 , 24) |
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 29th November, 2022, the Department of B
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