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DELHI HIGH COURT
PRATHIBA M.SINGH
Arnesh Shaw – Appellant
Versus
Union of India – Respondent


Table of Content
1. children with dmd deserve affordable healthcare. (Para 2)
2. government must finalize healthcare policy for rare diseases. (Para 3 , 5)
3. crowdfunding and timely policy are essential for rare disease treatments. (Para 4 , 6 , 7)
4. court directs timeliness in healthcare policy implementation. (Para 8 , 9 , 10)

JUDGMENT

Prathiba M. Singh, J. (Oral)--This hearing has been done by video conferencing.

2. Both these matters concern children, who are suffering from a rare disease known as Duchenne Muscular Dystrophy (hereinafter referred as "DMD"). The drug for this particular condition is stated to be at an experimental stage and is currently being manufactured by a company called Sarepta Therapeutics, USA. The relief sought in these petitions is that the government should be directed to ensure that the Petitioners are provided free treatment for this disorder, as the drug is exorbitantly expensive and is not affordable by the Petitioners.

3. In W.P.(C) 5315/2020, the Union of India through Ministry of Health and Family Welfare has placed on record an affidavit giving details of the various health policies, which are under consideration in respect of such rare diseas

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