ORDI Point of View Rare Diseases Policy Mar 2017

National Agenda on Rare Diseases:

1. To review the current situation of rare diseases in India and define rare diseases in the Indian context
2. To establish norms for laboratories/ centers for diagnosis of rare diseases.
3. To recommend the design for creation of a national registry system for rare diseases
4. To suggest funding mechanisms for dealing with rare diseases
5. To recommend measures to create awareness among the general public regarding prevention and management of rare diseases.
6. To frame a draft national policy for rare diseases in India.

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