Rare Diseases

Children suffering from such diseases have become petitioners in court, seeking a direction to the centre to provide them uninterrupted and cost-free treatment as the therapy for these diseases is very expensive. The secretary of the Union health ministry has been summoned by the Delhi High Court over non-compliance of its direction to the ministry to release Rs five crore for the treatment of children suffering from rare diseases.

Mr Ashok Agarwal appearing for the petitioner put it into the notice of the court that DMD is a recognized form of disability under the rights of persons with disabilities Act, 2016.

Justice Singh asked the government to create a digital platform for crowdfunding and the same shall be linked to the rare diseases fund.

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.

A single-judge bench comprising of Justice Prathiba M. Singh heard a batch of connected matters relating to the allocation of funds for people suffering from rare diseases.

The Ministry of Health and Family Welfare has introduced a draft National Policy for Rare Diseases 2020 on the direction of the Delhi High Court in response to a plea filed seeking free treatment of rare diseases.