The Delhi High Court has set up a five-member panel to implement the Centre’s rare diseases policy in an efficient manner and ensure that its benefits reaches patients.
The National Rare Diseases Committee will also look into the case of these patients, enrolled with the All India Institute of Medical Sciences (AIIMS), Delhi, and the manner in which their treatment can begin.
Under the National Policy for Rare Diseases, 2021, hundreds of patients — mostly children — are registered with the ‘Digital Portal for Crowdfunding and Voluntary donations for Patients of Rare Diseases’ by the Union Health Ministry. However, the government has been unable to fully finance their treatment due to high costs, resource constraints, and competing health priorities.
