The Court slammed the Centre for the delay in uploading the names of the petitioner at rarediseases.nhp.gov.in. and expressed her displeasure at Central Government for not transferring Rs.193 Crores, which went unutilized from the previous two years budget for rarediseases.
The Delhi High Court on Wednesday was informed by the Centre that once it notified the National Policy on Rare Diseases, the individual cases can be dealt with accordingly and the patients can be referred to the notified centers in the different institutes.
The Delhi High Court has constituted a nine-member Committee for the examination of feasibility of accelerated approvals and explore confidential proposal put up by M/s Sarepta Therapeutics