Patients Support Portal
In July 2017, the Ministry of Health and Family Welfare, Government of India, introduced the National Policy for Treatment of Rare Diseases (NPTRD). Although the policy established a framework for addressing rare diseases, its implementation encountered several obstacles. One major challenge was securing the participation of State Governments and determining the extent of financial support that the Central Government could provide for tertiary healthcare services. Since public health and hospital administration fall primarily under the jurisdiction of State Governments, effective implementation required their active involvement. However, comprehensive consultations with States during the policy's drafting phase were limited. After the draft policy was circulated, several State Governments expressed concerns regarding the cost-effectiveness of rare disease interventions compared with other public health priorities, the division of financial responsibilities between the Central and State Governments, and the need for flexibility to adapt the policy to their respective local circumstances.
List of Rare Disease Centres of Excellence in India