March 24, 2021 1:26:49 am
THE DELHI High Court Tuesday ordered the setting up a Rare Diseases Committee and a Rare Diseases Fund at AIIMS for dealing with cases of patients suffering from rare diseases. It also directed the Centre to finalise and notify the National Policy for Treatment of Rare Diseases on or before March 31.
Justice Prathiba M Singh ordered the setting up of National Consortium for Research, Development and Therapeutics for Rare Diseases to look after R&D of indigenous treatment for rare diseases, manufacturing of drugs, and inclusion of people in clinical trials.
According to the court order, the Committee has to examine the applications of patients suffering from rare diseases and recommend treatment and funding.
The decision has to be taken within two weeks of the application being received directly by AIIMS and within four weeks in case an application is received through other institutions notified under the policy, said the court.
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