It has been 18 months since KEM was selected as a centre of excellence, one of 11 across India, for treating rare diseases in four states: Maharashtra, Madhya Pradesh, Chhattisgarh and Gujarat. However, the funding of  Rs 5 crore for infrastructure and R50 lakh under the national policy for rare diseases remains only on paper.

The delay in implementing this policy has left parents of nearly 999 children in Group 3 of the rare diseases category, registered on the government’s rare disease crowdfunding portal, worried.