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DELHI HIGH COURT
PRATHIBA M.SINGH
Arnesh Shaw – Appellant
Versus
Union of India – Respondent
| Table of Content |
|---|
| 1. petition filed for treatment of rare diseases (Para 1 , 2 , 3 , 4 , 5) |
| 2. crowdfunding platform established for rare diseases (Para 6 , 7 , 10 , 11) |
| 3. court's monitoring and directions on funding and treatment (Para 8 , 9 , 13 , 21 , 30) |
| 4. indigenous development and funding for therapies essential (Para 14 , 17 , 19 , 20 , 22 , 23) |
| 5. ensuring timely treatment for patients (Para 24 , 25 , 27 , 28) |
| 6. part-heard matters scheduled for further review (Para 32 , 33) |
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
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