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Journalism of Courage
The Delhi HC recently constituted a five-member ‘National Rare Diseases Committee’ to implement the National Rare Disease Policy-2021 in an efficient manner and to “ensure that the benefits of the policy reach the ultimate patients of rare disease”.
A single judge bench of Justice Prathiba Singh in its May 15 order observed, “During the hearings before the Court, it is realised that there is a need for some urgent steps to be taken in close coordination between the medical community, the providers of therapies for rare diseases and the governmental agencies. Under the current framework, the centres for excellence are not centrally coordinated, leading to lack of timely availability and adequate therapies for patients with rare diseases — mostly children”.
The HC said that the committee shall comprise of Dr Nikhil Tandon (Prof AIIMS); Secretary, Ministry of Health & Family Welfare, or his nominee member; Director General, Indian Council for Medical Research; Drug Controller General of India; and Dr Madhulika Kabra, Professor, AIIMS.
The observations were made in a batch of pleas pertaining to children suffering from rare diseases.
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