Project Description 

This initiative aims to improve the early identification, accurate diagnosis, and appropriate referral of rare diseases in India through focused sensitization and capacity-building efforts. By strengthening clinical awareness and institutional preparedness, the programme seeks to enhance care pathways for patients affected by rare diseases across the health system. It leverages the technical leadership of premier institutions, including AIIMS, to provide structured technical backstopping and Training-of-Trainers (ToT) support, enabling scalable and sustainable capacity development.

Project Objectives 

1. Build awareness among healthcare providers in paediatric, haematology and genetics departments about common rare diseases, their early signs, screening modalities and the need for timely referrals.
2. Build a trainer’s resource pool at institutions -Train faculty and residents in AIIMS Delhi through structured modules (both online and offline). 
3. Establish a pool of trained master trainers from the selected medical colleges who will serve as mentors and trainers. 
4. Contribute to policy implementation by aligning with the National Rare Disease Policy and strengthening CoE-medical college linkages.