National Rare Disease Policy

National Rare Disease Policy. 2021.

IN NEWs…. Recently, the National Policy for Rare Disease , 2021 has been announced..

Rare Diseases. Here is where you add your talking points..

01. After lesser people compared with other prevalent diseases. Frequancy of less 6.5-10 per 10,000 people as per WHO. Also called ‘Orphan D iseases’ (treatment not devloped as less profitable). Example: Inherited canors , A utoimmuen disorders, Congenuital , Malformations, Hirschsprung’s disease, Gaucher disease, cystic fibrosis, etc..

Challenges in fighting. Differing definitions aeross the globe. No approved treatment or very less treatment theropies . Prohibitively expensive drugs. Lack of epidemiological data on prevalence. Lack of research & funding on them. Debate of rare d iseases V/S common diseases (public health policy)..

National Policy for Rare Disease, 2021. Categorised into….

National Policy for Rare Disease, 2021. Need. Increased focus on research & local production of medicines. Encouragement to expend financial support. Ensure adequate data & comprehensive definition. Early screening, detection and prevention ..

Suggestions. Balance competing priorities of public health. Immediate seed- funding to prioritise treatment. Extend cost – sharing agreements with states..

Subscribe. Research & Analysis Hub.