The Supreme Court recently has sought responses from the Centre, 34 states and union territories, on a plea to set up state-level committees to ensure proper treatment of patients suffering from rare diseases. The Ministry of Health and Family Welfare on May 25, 2017 approved to frame a "national policy on treatment of rare diseases" in every state and union territory of the country. However, only Delhi and Jharkhand have set up a technical-cum-administrative committee to ensure diagnosis and proper treatment of rare diseases.
A PIL was filed by a Bangalore-based 'Organization for Rare Diseases India' in view of failure to launch such panel in other states. The petition said the failure of states and union territories in constituting administrative committees and identifying hospitals for treatment of rare diseases was "arbitrary, discriminatory, unjust and violative" of fundamental…
