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DELHI HIGH COURT
PRATHIBA M.SINGH
Arnesh Shaw – Appellant
Versus
Union of India – Respondent
| Table of Content |
|---|
| 1. identification of petitioners suffering rare diseases. (Para 1) |
| 2. petitioners seek free treatment for rare diseases. (Para 2) |
| 3. government policies and consultations on rare diseases. (Para 3 , 4) |
| 4. court emphasizes right to health and urgent policy finalization. (Para 5 , 6) |
| 5. clinical trials and expert committee proposed for rare diseases. (Para 10 , 11) |
| 6. expert committee report highlights need for indigenization and funding. (Para 12 , 13) |
| 7. budget allocations and expenditures for rare diseases. (Para 14 , 18) |
| 8. importance of r&d and creation of a permanent fund. (Para 15 , 16 , 17) |
| 9. court's directives on policy finalization and patient assistance. (Para 19 , 21 , 22) |
| 10. court directs further processing of treatments for petitioners. (Para 23 , 24 , 25 , 26 , 27) |
JUDGMENT
Prathiba M. Singh (Oral)--The Petitioners in these cases, who are mostly children, are suffering from the following Rare Diseases:
| Rare Diseases | Petitioners | Age | Writ Petition Number |
| Duchenne Muscular Dystrophy (hereinafter, "DMD") | 1) Master Arnesh Shaw | 7 years | WP(C) 5315/2020 |
| 2) Master Aviraj Garg | 4 years | WP(C) 10782/2020 | |
| 3) Master Harshit Soni | 16 years | WP(C) 3682/2021 | |
| 4) Master Dhananjay Bharadwaj | 11 year | ||
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