A very comprehensive National Policy for Rare Diseases 2021 has been finalized by the Ministry of Health and Family Welfare. The Rare Diseases Policy aims to:
Lower the high cost of treatment for rare diseases
Increase focus on indigenous research related to rare diseases
Create a national hospital based registry of rare diseases
Focus on early screening and prevention through primary and secondary health care infrastructure
Strengthen tertiary health care facilities for prevention and treatment of rare diseases through designating 8 health facilities as Centre of Excellence
Develop crowd funding mechanism in which corporates and individuals will be encouraged to extend financial support through a robust IT platform for treatment of rare diseases.
