NEW DELHI: On July 14, the Delhi high court will hear 20 cases filed by patients of rare diseases against the Union of India. Patients and their advocates are hopeful that they will get a date by which the government will be able to set up a digital crowdfunding platform for patients of rare diseases, as promised under the National Policy of Rare Diseases notified on March 31 this year.
In an affidavit dated January 22, the health ministry that drafted the policy indicated that “the digital platform is likely to be operational by 31.3.2021”. But more than 100 days later it is still not ready. In another affidavit, it said the setting up of the crowdfunding platform had been delayed due to pandemic.