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Connected With D.B. Civil Contempt Petition No. 803/2020 Zamil S/o Shri Ismile,

----Petitioner Versus Rajiv Swaroop Chief Secretary, Government Of Rajasthan and ors.

----Respondents For Petitioner(s) : Mr. B.C. Chirania, Mr. Ravi Chirania, Mr. Mukesh Kumar Verma For Respondent(s) : Mr. R.D. Rastogi, ASG with Mr. Akshay Bhardwaj for the UOI through Video Conferencing Dr. V.B. Sharma, AAG with Mr. Avinash Choudhary HON'BLE MR. JUSTICE MANINDRA MOHAN SHRIVASTAVA HON'BLE MR. JUSTICE FARJAND ALI Order 28/10/2021 In this PIL, various directions have been issued in the past which are aimed at ensuring treatment of children identified to be suffering from rare disease 'Gaucher'. As the petition seeks to ventilate a grievance that proper treatment facility is not being provided to the children suffering from this disease, mainly because it incurs heavy cost of procuring medicines for treatment, the Union of India as well as the State both were asked by this (2 of 3) [CW-17098/2019] Court to file their response as to how they have planned to provide treatment.

Learned Additional Solicitor General of India has referred to a policy framed by them titled as 'Draft National Policy for Rare Disease'. This policy, as it is admitted, has been framed in compliance of the directions dated 23.03.2021 issued by the Delhi High Court in Writ Petition (Civil) No.5315/2020: Master Arnesh Shaw Vs. Union of India and Anr.

Broad outlines of the policy was narrated before this Court and we find that it is very comprehensive policy to treat various rare diseases including 'Gaucher' which is the disease from which the children in the present case are suffering from.