JUDGMENT

Prathiba M. Singh, J.

1. This hearing has been done through hybrid mode.

Table of Contents

Introduction to Rare Diseases & History of proceedings	2-247
Submissions Of Parties	248-288
Analysis And Conclusions	289-338
Final Conclusions and Directions	339-347

W.P.(C) 5315/2020 & connected matters Page 33 of 235 Signature Not Verified Digitally Signed INTRODUCTION TO RARE DISEASES

2. The present batch of petitions have been filed by the Petitioners who are mostly children suffering from rare diseases. These matters have been heard by the Court from time to time since 2020 and various directions have been issued for enabling treatment and making medicines available to the Petitioners.

3. It is the case of the Petitioners that the medicines and therapies for all these 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.

Summary of the Petitioners’ and their ailments

S.No.	Writ Petition No.	Pa

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