Rare Diseases

In March 2021, The Ministry of Health and Family Welfare has approved the National Policy for Treating the patients of Rare Disease. Major thrust areas of the policy are to increase focus on indigenous research, to screen and detect rare diseases at early stages by strengthening CoEs, which will in turn help in their prevention and financial assistance to patients through various schemes like Rashtriya Arogya Nidhi, PMJAY and alternatives like voluntary crowdfunding by setting up a digital platform for voluntary individual contribution and corporate donors. Policy also thrust upon developing national registry to support evidence based policy making and research. while notification of National Policy is a right and timely step to support patients suffering from rare diseases, it require continuous advocacy to enhance government commitment to support patients from group 3, support patients to have early access for innovative treatments, enhance diagnostics and expedite the process of making registry. USIN with its member companies is working to advocate on above matters and conducting few roundtable discussions to bring stakeholders to discuss various issues to gather recommendations.