We in India, believe that it would be important to garner momentum on Rare Diseases. In order to do that ICMR, AIIMS, JNU and PRESIDE propagated a concept called the National Initiative for Rare Diseases with the following objectives:

  • Create a Forum for Rare Diseases which can bring about the unmet need and find solutions to address them
  • Work on identifying the missing cases, and thereby creating a National Registry for Rare Diseases – to identify the magnitude
  • Bring along the Government bodies, academia, treatment centers, research organizations, regulatory bodies, industry and funding organizations to collectively address the unmet need in India. This would also help create funding options that are not available in India

In order to do these broad and many more activities, it was important to create a movement, to involve all stakeholders at a time and possibly come to a positive conclusion of a next step. With this intent, the first edition of NIRD was held on 26th and 27th April 2017 at the India International Center, New Delhi.

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